The UN Convention on the Rights of the Child, from 1989, and the UN Convention on the Rights of Persons with Disabilities, from 2007, define a vision in which party States ensure the welfare of children with disabilities and their right to enjoy a full and respected life in the community, with their families, in conditions which meet their basic needs and ensure their ability to actualize their potential, enjoy basic liberty, freedom of expression, active and inclusive participation in the community life, based on equal opportunities. Approximately 8.7% of the children in Israel cope with functional challenges, disabilities or chronic diseases requiring constant intervention through medical or non medical care. The aim of the current article is to outline the international vision defined by the Conventions and the situation in Israel regarding the rights of children with disabilities to life, life with family in the community, education, health and accessibility — as legislated and as actually implemented. The article shows that Israel is committed to the international conventions and has invested much in legislation, budget and services for ensuring the social rights of children with disabilities in all areas of life. However Israel still faces the challenges of carrying out the paradigm shift towards the human rights model of disability in practice, by ensuring equal opportunities; by abolishing the poverty and discrimination of the geographical and social periphery; and by implementing inclusive education and accessible public areas and services to all.
"…and you shall choose life,
so that you will live,
you and your offspring"
The need to give special attention to children was first proclaimed in 1924 as part of the Geneva Convention. In 1959, the General Assembly of the U.N. approved the resolution on the rights of the child. Reference to this matter also appears in the Universal Declaration on Human Rights, in the Convention on Civil and Political Rights, 1966 (especially in articles 23 and 24), in the Convention on Economical, Social and Cultural Rights, 1966 (especially in article 10), and in basic regulations of special agencies and international organizations that deal with the welfare of the child. The Convention on the Rights of the Child (hereafter; CRC) was adopted by the U.N. in 1989 and entered into force in 1990. The CRC sets forth a full spectrum of civil, cultural, economic, social, and political rights for children (Flekkoy, 1991). Article 23 of the CRC defines the vision that relates specifically to children with disabilities as follows:
- States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions that ensure dignity, promote self-reliance, and facilitate the child's active participation in the community.
- States Parties recognize the right of the disabled child to special care and shall encourage and ensure the extension, subject to available resources, to the eligible child and those responsible for his or her care, of assistance for which application is made and which is appropriate to the child's condition and to the circumstances of the parents or others caring for the child.
- Recognizing the special needs of a disabled child, assistance extended in accordance with paragraph 2 of the present article shall be provided free of charge, whenever possible, taking into account the financial resources of the parents or others caring for the child, and shall be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child's achieving the fullest possible social integration and individual development, including his or her cultural and spiritual development
- States Parties shall promote, in the spirit of international cooperation, the exchange of appropriate information in the field of preventive health care and of medical, psychological and functional treatment of disabled children, including dissemination of and access to information concerning methods of rehabilitation, education and vocational services, with the aim of enabling States Parties to improve their capabilities and skills and to widen their experience in these areas. In this regard, particular account shall be taken of the needs of developing countries.
The CRC emphasizes the importance of supplying every kind of assistance and service needed to provide children with disabilities basic living conditions with their parents and possibilities for cultural, spiritual, qualitative and active self development. The CRC does not mention the needs of the other members of the nuclear family or the importance of the physical development of the child, and does not refer to children with mental or intellectual disabilities.
The Convention on the Rights of Persons with Disabilities (hereafter, CRPD) includes special reference to children with disabilities, both in articles where it is relevant and separately in Article 7, which outlines the following vision:
- States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.
- In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.
- States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.
Israel adheres to international conventions and has ratified the following treaties:
- International Covenant on Economic, Social and Cultural Rights
- International Covenant on Civil and Political Rights
- International Convention on the Elimination of All Forms of Racial Discrimination
- Convention on the Elimination of All Forms of Discrimination Against Women
- Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment
- Convention on the Rights of the Child
- Optional Protocol to the Convention on the Rights of the Child on the Sale of Children, Child Prostitution and Child Pornography
CRC was signed by the State of Israel on July 3, 1990, ratified by the Knesset (Israel's Parliament) on August 4, 1991, and went into effect on November 2, 1991. CRPD was signed by the State of Israel on March 31, 2007. Although the Convention does not have the status of law, it is often cited in rulings of both the supreme and the lower courts as a legal source and a basis of interpretation. The fundamental principles declared in the Convention, however, seem identical to the fundamental principles on which laws concerning children are based in Israel, and to principles underlying Israeli law (Levush, 2007).
Israel's periodic report to the United Nations Committee on the Rights of the Child notes additional international conventions concerning children to which Israel is a signatory.
For example, since 1953, Israel has been a party to conventions of the International Labor Organization (ILO), primarily the Convention Concerning Medical Examination of Children and Young Persons in Non-industrial Occupations (No. 78, 1946); the Convention Concerning Medical Examination for Fitness for Employment in Industry of Children and Young Persons (No. 77, 1946); and the Convention Concerning Night Work for Children and Young Persons in Industrial and Non-industrial Occupations (No. 90,1948 and No. 79, 1949). Since 1980, Israel has been a party to the International Labor Convention Concerning Minimum Age for Admission to Employment (No. 138, 1973). In addition, Israel is a party to the Hague Convention on International Private Law. Since 1991, Israel has been a party to the Hague Convention Concerning Civil Aspects of Child Kidnapping (No. 513 XXVIII, 1980), and since 1995, Israel has been a party to the Hague Convention Concerning the Protection of Children and Cooperation in Respect of Inter-country Adoption (1993). Principles enumerated in these conventions have been incorporated in Israeli domestic legislation. Additionally, in accordance with the Registration of Information on the Influence of Legislation on the Child's Right Law, 5762-2002, members of Parliament and the government are required to review, in the process of preparing a bill for a first hearing, the bill's potential influence on the rights of children, in the spirit of the CRC (Levush, 2007).
The current article aims to describe the situation of children with disabilities in Israel—in light of the CRC and CRPD Conventions, the Israeli legislation and legal precedents—especially regarding the rights to life, life with family in the community, education, health and accessibility.
More than 7 million citizens inhabit Israel today; 2.3 million are children. 18.7 percent of the adults and almost one-quarter of school-aged children are Israeli Arabs2 (National Council for the Child, 2006). 12.8%—compared to 15-20% elsewhere—of children in Israel are recognized as having one or another kind of disability (Newacheck, Strickland, Shonkoff , Perrin, McPherson, McManus, et al, 1998). 3 Half of the 8% are children with learning/behavioral disabilities, 16% have chronic diseases, 14% have physical disabilities, 11% have sensory disabilities, and 6% have intellectual disabilities. 8% of these children need socio-educational support, medical or paramedical treatment on a regular basis (Naon, Morgenstein, Shimel, and Rivlis, 2000). The rate of boys with disabilities (9.8%) is almost twice the rate for girls (5.4%). The number of children with disabilities is especially high in municipalities on a very low socioeconomic level: 11% versus 7.7% in the general population. Most of these municipalities are in rural areas and the Arab sector (Naon, Ifrach & Bayts-Morai, 1998). Feldman and Ben Moshe have recently found connections between disabilities, living in rural areas, belonging to the Arab or Russian immigrant sectors, and unfavorable socioeconomic situations (2007).
This reality is far from the Israeli vision as expressed by the comprehensive system of laws that protects all children's rights and safety in all areas of life: primary, secondary, vocational, and higher education, as well as students' rights, special assistance and accommodations supplied with the goal of full integration into regular schools and society to the extent possible. Health benefits cover pregnancy and childhood and include preventive services as well as early intervention and health education programs. The State offers an extensive system of welfare services and social security, including a children's monthly allowance and special benefits to children with disabilities and their families (Levush, 2007). In addition to the gap between vision and implementation, part of the old legislation has to be modified due its being based on the medical model, which labels impairment by appealing to pathology, offers solutions chiefly to persons with severe disabilities, and takes a patronizing approach toward disabled people (Rimerman and Katz, 2005). As elsewhere (UNICEF, 2007), there is obviously also a need to accomplish this paradigm shift in practice (Avrahami, 2003; Avrahami and Rimerman, 2005; Rimerman and Artan-Burgman, 2005; Rimerman and Katz, 2005), with the aim of ensuring full and active inclusion of persons with disabilities in general, and children with disabilities in particular. This will happen only by preventing disability-, ethnicity- and geography-based discrimination and promoting equal opportunities and barrier free environments (Feldman and Ben Moshe, 2007).
The legal breakthrough in this paradigm shift started in Israel a decade ago, in connection to the right to education for all, with a child named Shahar Botzer. Botzer appealed to the Supreme Court in March 1996, against the Maccabim-Reut Local Council, after being refused to public sites in his community, and especially to his school, to which he did not have access due to his mobility disability. For the first time, the Israeli Supreme Court held that the right of persons with disabilities to full inclusion in society derives from human rights (Ofir and Orenstein, 2001; Admon, 2007; Oren and Dagan, 2007). The second meaningful wave of human rights advocacy for the inclusion of children with disabilities took place in 2002. As has happened all over the Western world (Soodack and Erwin, 2000; Soodak, 2004; Swart, Engelbracht, Eloff, Pettipher and Oswald, 2004; Engelbrecht, Oswald, Swart, Kitching, and Eloff, 2005), it has been led mainly by parents' organizations such as Yated, an organization that represents parents of children with Down Syndrome and Bizchut, an umbrella organization comprised mainly of families' organizations. Both organizations believe in the right of children with disabilities to live in the community and learn in regular schools with the full array of assistance and accommodations provided to students in special education schools.
Bizchut and the Katz Public Committee (1997) initiated and assisted in formulating the Equal Rights for Persons with Disabilities Law, 5758 (1998; hereafter, the Equal Rights Law). The Equal Rights Law is intended to ensure the commitment of Israeli society to equal rights for persons with disabilities by eliminating disability based discrimination, promoting equality through reasonable accommodations and affirmative action, ensuring solutions for special needs, and actively involving persons with disabilities in personal and public decision-making (Feldman, 2005). The chapters of the Equal Rights Law that have been enacted to date are those on principles, the right to employment, and the right to accessible public transportation, establishing an Equal Rights Commission and its Advisory Committee. Further, since March 2005, Israel has also enforced the right to accessibility to buildings both old and new, including infrastructure, environment and services provided to the public by all sectors—public, nonprofit and private. Many of these accommodations are especially relevant to children with disabilities in all areas of life, such as educational institutions, cultural facilities, day care centers, day nurseries, sports and amusement parks, infant health clinics, etc.
The other chapters are included in the Proposed Equal Rights of Persons with Disabilities (Amendment) (Housing in the Community and Personal Assistance, Culture, Leisure and Sport, Education and Knowledge, Legal System, Special Needs and Information) Bill, 5761 — 2000. The commitment of the State of Israel to the implementation of the CRPD and the new legislation enacted since then will require many amendments to this Bill and others.
During the last decade a series of other laws dealing with the principles of human dignity and equality has also been enacted, the most relevant to children being the 'Prohibition of Discrimination in Products, Services, Entrance to Places of Entertainment and Public Places Law, 5761 — 2000.' This law aims to prevent disability-based barring of persons with disabilities from public places. Also significant is the 'Rehabilitative Day Care Centers Law, 5760 — 2000', which concerns the right of a toddler with a severe disability to receive treatment and education in day care centers in the community, but still excluded from toddler without disabilities. The 'Free Education for Sick Children Law, 5761 — 2001' ensures the right of sick children to education in facilities other than schools; the fourth Amendment to the 'Welfare (Care of Retarded Persons) Law, 5729 - 19694,' passed in the year 2000, requires giving first priority to treatment within the community. The extensive seventh Amendment to the 'Special Education Law, 5748-1988' in 20025, an amendment known in Israel as the 'Inclusion Law,' mandates the right of students with disabilities to learn and get assistance in mainstream educational settings. The 23rd Amendment of the 'Land Law, 5729-1969'6' ensures the right of a resident with disabilities to carry out accommodations on the joint property of a residential building, and the 61st Amendment to the 'Planning and Building Law, 5725 -1965'7 relates to a group of no more than six residents with mental or intellectual disabilities in an apartment as living "at home" and not at an institution. Finally, the 'Television Broadcasts (Subtitles and Sign Language) Law, 5765 — 2005' requires television broadcasts to be accessible to persons with hearing disabilities through the use of subtitles and sign language.
Does this decade of human rights legislation really represent a human rights paradigm shift that affects the attitudes of the public and the day to day life of children with disabilities and their families? The current article aims to deal with this question by describing the situation in Israel with regard to the right to life, the right to grow up in their families, and live in the community, the right to education, health and free barrier environment (accessibility), in the spirit of the Conventions, Israeli legislation and case law.
The Right to Life
The past 20 years have seen rapid advances in the detection of genetic disorders and impairments in human fetuses (Roberts, Stough and Parrish, 2002). Prenatal screening has become an increasingly common procedure, particularly for women who are at risk for giving birth to an infant with disability. Prenatal screening is concerned with the detection, and often the avoidance, of disability in uteri (Kaplan, 1993) and has been found to significantly decrease the prevalence of infants born with disabilities (Bull, 1999; Forrester, Merz and Yoon, 1998; Richards, Bentley and Glenny, 1999). That fact points to a situation in which the birth of a child with disability and his/her right to life is no longer self evident.
This reality, found in many countries, motivated a universal declaration of the U.N, in March 2006, on bioethics and human rights. The declaration expressly states that the best interests of the person and his welfare shall take precedence over those of science and society. Similarly with article 6 of the CRC, which proclaims the right of every child to be born and enjoy life, including children with disabilities, and the obligation of party States is to ensure the survival and natural development of children, to the extent possible. Article 10 of the CRPD also deals with the right of persons with disabilities to life, and obligates party States to assure every human being the inherent right to life and to take all necessary measures to ensure that persons with disabilities can enjoy life on an equal basis.
In Israel, the right of a fetus with a disability to be born is not clear. Article 1 of the 'Legal Capacity and Guardianship Law, 5722 — 1962' entitles every person to rights from the moment of birth; on the other hand, Article 33(a)(6) of the same Law allows the court to appoint a guardian for the fetus. Article 2 also defines a fetus as a child, and Article 6C of the 'Anatomy and Pathology Law (Amendment), 5741 — 1980' allows the removal of a fetus from the body of a deceased person in order to enable him to live without requiring the agreement of blood relatives. The ambiguity is increased by Article 313 of the 'Penal Law, 5737 — 1977,' which deals with the prohibition of terminating a pregnancy in a manner that seems to acknowledge the fetus's right to live, by making termination of his life a criminal offence. On the other hand, pregnancy may be terminated under certain circumstances, most of them not directly related to the fetus at all. One such circumstance is listed in Article 316(a)(3) of the Law: 'The newborn might have a physical or mental disability.' The law sets no limitations on the power of the medical committee to approve the termination of a pregnancy from a certain phase in the pregnancy onwards.
For many years, these differing tendencies have prevented the courts from recognizing the status of the fetus as a plaintiff. The root of the problem can be summarized by the following question: How can the fact of being born be considered harm? Meaning: how can a person allege that, 'I would have been better off not being born?' Surely the plaintiff has never had a better life, and the comparison is between an impaired life and no life [C.A.(Jerusalem) 1591/96 Anon. vs. Assaf Harofeh Medical Center et al.(2001)]. That is the case when a child with disability sues his parents for giving birth to him despite prenatal tests showing that he was a fetus with a disability. This type of suit constitutes one of the arguments for why even the cause of action against external bodies should not be acknowledged; the courts in many countries refuse to accept that the fact of bringing a child into the world, even if disabled, can be considered a 'harm' that entitles the plaintiff to damages. In England, this cause of action has been denied by law, and in the United States it is only recognized in a few states (among them: New York, New Jersey, California and Washington), and then in severe cases only, and limiting the element of compensation to a minimum (Yalink, 1997).
Another subject of litigation concerns the suit of the child and/or his parents against a third party, mostly doctors and genetic advisors, with the pretext that negligence caused the birth of a baby with severe disabilities — due to a lack of skill in carrying out and interpreting ultrasound tests, non referral to diagnostic tests, inattention or insufficient attention to the findings of such tests, the absence of a doctor at critical moments, prolonged disregard of fetal distress, non execution of a required Caesarian section, negligence in carrying out a vacuum delivery or forceps birth, etc. The parents typically demand compensation due to monetary expenses and non pecuniary damages caused them due to the birth and the raising of a child with a disability. The child typically demands compensation due to the harm caused him by his "wrongful birth" or "wrongful life." According to this approach, disability might no longer be seen as an acceptable, natural fact of life, but as a wrong that justifies criminal or civilian litigation and/or financial compensation (Tedski, 1978).
The issue first arose in Israel at the Supreme Court in the Zeitzov affair, [C.A. 518/82] from 1986. Judges in the case disagreed about whether to legitimate this cause based on the assumption that 'it would have been better had the newborn with extremely severe disabilities never come into the world,' whether this cause should be dealt with judicially, or in the context of legislation. Finally, the majority opinion held that Israeli law must recognize the cause of action due to 'wrongful birth' when it is in the best interests of the newborn, and that only in rare cases of newborns with extremely severe disabilities is there an option to assume that it would have been better had the newborn never come into the world. This judgment is an example of the tension between two approaches in law: the blaming and the utilitarian ones. The High Court judges were debating whether to accept the blaming approach, as they did in the previous instance, which means that the moral worth of an action is determined by the intention of the decision maker (in this case: Dr Zeitzov, the genetic counselor) and that by not recognizing the 'wrongful birth' concept, as defined by the laws of damages, which means that abortion is preferable to life as disabled — or to accept the utilitarianisms approach, which is a form of consequentialism and means that the moral worth of an action is determined by its outcome—the ends justify the means. According to this approach the absence of moral blame of the genetic counselor does not rule out the right of the disabled newborn to get compensation for his 'wrongful birth.' By that the Supreme Court recognized, as a precedent, the concept of 'wrongful birth' as related to extremely severe disabilities and left the definition of what "severe" means to the decision of individual courts8
Since then, many additional judgments have been inclined to recognize this cause in cases of very severe disabilities, and the concepts of 'wrongful birth' and 'wrongful life' have permeated the consciousness of the relevant public, lawyers, ethical figures and health professionals, making the arena of human rights in this matter even more stigma—ridden and complex.
The 'relevant public' includes 2600 babies with disabilities who are born in Israel every year and their families. The most common disabilities at birth are in the cardiac system, the blood vessels (about 1,151 children) and disabilities in the sexual organs and in urine systems (about 563 children) (National Council for the Child, 2006).
In 1999, the existence of a physical disability in a newborn was the reason for 20% of all pregnancy terminations (3,116 terminations), which were performed according to the decision of a special medical committee functioning in every general hospital in Israel; in 2000, the rate decreased to 16.7% (3,249 terminations); and in 2001 to 15.8% (3,210). In 2002 the percentage of terminations due to disability increased again, to 17.2% (3,396). According to the above report of the Ministry of Health (2005), in the years 1997-2001 half the abortions of the Jewish population were of fetuses diagnosed as having Down syndrome. Probably there were also illegal abortions the number of which is unknown (Shahak, 2003).
In the opinion of Hashiloni-Dolev (2005), there is an 'inflation' of disability based pregnancy terminations in Israel. It is a result of 'medical pressure' exerted on women through the huge variety of prenatal examinations offered by the Israeli hospitals: tests to discover severe diseases (such as Tay-Sachs), diseases whose treatment is improving (such as Cystic Fibrosis), and conditions that may not be defined as a disease at all (cleft palate, infertility, alcoholism). The medical system expressly encourages women to perform up to ten genetic screening tests, in addition to three 'systems scan' ultrasounds, a 'nuchal transparency' ultrasound and an amniocentesis (which is not only performed, as expected, on women aged 35 and over). This biogenetic activity involves significant financial benefit to the hospitals9, as well as research fund raising and personal and institutional prestige, but first and foremost derives from personal and professional attitudes (Hashiloni-Dolev, 2005).
In a comparative survey performed by Hashiloni-Dolev (2004) among 295 genetic advisors in Israel and Germany, she found that 13% of the Israeli advisors believed that the 'purpose of genetic advising is to reduce the amount of bad genes in the population.' None of the German doctors agreed with this claim, and 61% of the genetic advisors in Germany believed that 'the disabled enrich society;' In Israel only 40% of genetic advisors believed this. Wertz (1992; 1997), and Wertz and Gregg, (2000) found that the willingness of Israeli genetic advisors (73% of them) to offer terminations of pregnancy in cases of fetuses with Down syndrome is high not only in comparison to German advisors (23%), but also in comparison to American advisors (13%) and others.
Hashiloni-Dolev (2004) believes that the health system today is sliding down a slippery ethical slope caused by genetic innovations in defining what a 'worthy life' is, and is thereby exceeding its ethical limits. The risk of being at a point of 'no return' is also connected to the fact that today the non-performance of tests for screening disabilities can be considered medical malpractice and constitute a cause for legal action due to 'wrongful birth' and 'wrongful life.'
The Right to Live with the Family in the Community
The economic and social circumstances of poverty, the twilight world of statelessness and political conflicts, and the absence of effective support have been challenging the ability of families all over the world to take care of and protect their children who are considered the weakest and the most vulnerable members of the community (Panter-Brick and Smith, 2000). Among them are children with disabilities, who are at the highest risk to be abused or abandoned by or replaced in their families. Beyond the complexity of the family situation, studies over the past decade investigating children with disabilities placed in out-of-home care have shown that these children experience higher rates of health problems (Schor and Erickson, 1994), emotional and behavioral problems (Pilowsky, 1995), and learning and educational problems (Sawyer and Dubowitz, 1994) than children in the general population (Romney, Litrownik, Newton and Lau, 2006).
Out of concern about families solving the challenges of raising a disabled child by removing the child from the home, the CRC and the CRPD declare the family as the basic framework and natural environment for the development of its members, and especially of its children. They mandate the shared responsibility of parents to raise children, encourage their natural and safe development, and state that the best interests of the child should be the top priority of the parents. The CRPD obligates party States to ensure that children will not be separated from their parents against their will, unless the relevant authorities determine that such separation is necessary for the best interest of the child, such as in cases of abuse, neglect or destructive separation between the parents. In that case priority should be given to custody with other family members over arrangements with non-family members, and the child still has the right to continue a personal relationship and have direct contact with the parents, unless this may harm him.
Following this approach, the Israeli 'Legal Capacity and Guardianship Law — 1962' defines the parents as the natural guardians of their minor children, responsible to fulfill all their needs. Section 362 of the 'Penal Law, 5737 — 1977', states that: 'The parent of a child under age fourteen or of a person unable to fulfill his daily needs (in this section and the next — Protectees) and any person required by law or agreement to fulfill the needs of a protectee under his care, who fails to provide food, clothing, sleeping arrangements and other vital everyday needs, to the extent required to assure his safety and health, shall be subject to three years imprisonment, unless proving that he took reasonable steps in the circumstances to procure the means necessary to fulfill said needs and is unable to fulfill them'.
The Penal Law, as amended by the 59th Amendment thereto, of 200110, also sets punishments for parents who abandon their children before age six, and by doing so, endanger the life or health of the child. The main goal of this part of the law is to prevent the abandonment of babies in hospitals, which is a part of a more general phenomenon of child abandonment at all ages
In Israel, about 200 newborns are abandoned each year. About 70% of them have severe intellectual, physical or external disabilities, (Weiss, 1991). Most of the abandoned children end up in institutions; the rest are adopted or live in foster families (Ifrach, 1998). In order to limit this phenomenon the Social Work Regulations No. 14.21, from 1992 and a special guide set out a procedure for staff to intervene with parents in cases of a disabled fetus or baby. The intervention has shown an increase in the number of families agreeing to take the disabled babies home (Figalson and Weisberg, 1994).
Part of the hesitation of parents to bring their disabled babies home derives from the psychological agony of losing the dream of having a healthy and perfect baby (Weiss, 2002), and part of it is relates to realistic fear of day to day challenges. Indeed, 38% of caregivers caring for a family member with disability report some level of burden, 28% a heavy level of burden, especially in taking care of family members with intellectual disabilities, and 24% a minor one. Only 37% of work, and 44% work less hours than they used to (Shtrosberg, Naon, Bar and Morgenstein, 2004). Similarly to the situation in families of regular children (Navon, Feygin & Drori, 2001; Heiman, 2002;Turnvull, 2002; Woodinsky, 2003), Naon, Morgenstein, Shimel & Rivelis (2000), found that socioeconomic difficulties and poverty are the crucial high risk factor in abuse and neglect of children with disabilities: they report that about 76% of abusive families have a lower income than average; most of them (70%) live in low and very low socioeconomic local authorities, which means fewer medical and social services. In about a fifth of the families, both parents are unemployed and rely on income assurance payments (in Hebrew: "Havtachat Hachnasa").
In order to improve the financial situation of families of children with disabilities, and to prevent their slipping under the poverty line, under the 197311 amendment of the 'National Insurance Law [Consolidated Version], 5755 — 199512', about 22,000 children with severe disabilities are recognized by the National Insurance Institute (6/2007) as eligible for a disabled child allowance of up to 2,118 NIS per month. 1,804 of these are infants, 5,292 are aged 3-7, and 14,310 are aged 8-18. The rate of children receiving a disabled child allowance from the National Insurance Institute is almost the only area in which there are no differences between the Arab and the Jewish sectors (Dolev, Ben Rabbi, Almog and Bandur 2001). According to the Ornoy Public Committee (2000), 4,350 more children should be eligible due to their daily needs. This eligibility opens the possibility of additional financial support, reductions and exemptions given by various authorities in many areas of life such as: personal assistance, housing, education, private and public transportation, communication, taxes, etc., as well as the right to health, mental health, welfare and rehabilitation services.
In addition to financial support, the need for rehabilitation services frequently arises. The goal of these services is to facilitate and empower the day to day functional and social capacities of children with disabilities and their families. Chapter 26 of the CRPD defines the duty of party States to supply a variety of rehabilitation services and interdisciplinary plans to identify needs and abilities, and to cultivate competence to participate in all areas of life at the earliest possible age. In Israel, social skills development programs for children with disabilities living in the community are mainly supplied by the special education system and by informal education systems in schools, community centers, youth movements, nongovernmental facilities, etc. Psychosocial rehabilitation and protective services are supplied by the Ministry of Welfare to those who cannot live at home or in the community with the exception of the 'Rehabilitative Day Care Centers Law, 5760 — 2000', according to which toddlers aged 3 and below with intellectual disabilities, severe developmental disabilities or autism are entitled to enjoy extended day care facilities that provide a variety of services, including para-medical intervention and preschool educational services. Every year, about 250 toddlers enjoy this arrangement. There is no real sense why these services are not provided also by the education system based on integrative formal and informal educational models.
In recent years it has become clearer that despite all the preventative efforts described above, children with disabilities, as compared to children without disabilities, are still at higher risk to be abused (1.7 to 2.2) and/or neglected (1.6 to 2.8) by family, professional staff or peers at school than other children (Marom, Uziel and Naon, 2002). The most frequently abused children are those with mental, developmental and emotional disabilities (Nelson-Brian, 2002; Balderian, 1991). Some of these have been involved in litigation at the Court of Family Affairs established by the 'Family Affairs Court Law, 5755 — 1995'.
Article 16 of the CRPD deals with assuring freedom from abuse, exploitation and violence by all means, including prevention and education programs. In Israel only recently has the government taken a significant step to improve the situation of children at risk. Governmental Resolution 477 of September 2006 includes the obligation to adopt the main recommendations of the Schmid Committee (2006) at the national level and establish an inter-ministerial committee to implement, as recommended world wide, a multi-system action plan based on cooperation and coordination among agencies (Westcott & Jones, 1999). The strategic plan was budgeted at about two billion NIS; half will be financed by the State and half by the business sector.
In the meantime, the first emergency center for at-risk children with disabilities and their families was established in September 2007 in Jerusalem. It includes an external unit that supplies preventive and supportive services in the community, and an emergency unit for victims of family abuse, which provides a transfer shelter with emotional and legal services. The experience that will accrue shall serve to better integrate children with special needs in 10 other centers that are functioning all over the country for all children at risk.
When the cases of persons with mental and intellectual disabilities who were victims of abuse get to the courts there, it is essential to assure the accessibility of the investigation procedures and testimony. This importance was acknowledged by Article 13 of the CRPD and by the Israeli parliament. In 2006 the 'Investigation and Testimonial Procedures (Adjustment for Persons with an Intellectual or Mental Disability) Law, 5766- 2005' was passed. The Ministry of Welfare is in charge of implementing this law.
This new law complements previous Israeli legislation aiming to ensure that maximum offenders will be found and punished, such as: the Legal Capacity and Guardianship Law, 5722 — 1962 (and the amendment13 to this law dated 1965) and the 'Penal Law (Amendment 26), 5750-1989 (Chapter F1: Harming Minors and Helpless Persons)'. According to Amendment 26, any person or citizen, including professionals on the job, who discovers that an offense was performed against a minor by someone in responsible for him, is obligated to report it. The 'Prevention of Family Violence Law, 5751-1991' gives the court the authority to issue a protective order for a minor against an attacker who is a family member. In 2005 about 13 children were represented by the Public Defender located in the Ministry of Justice (National Council for Children, 2006). No estimation of how many of them are children with disabilities was provided.
In extreme cases, and pursuant to the 'Welfare (Care of Retarded Persons) Law, 5729 -1969', the 'Youth (Care and Supervision) Law, 5720-1960', and the 'Welfare (Legal Procedures Regarding Minors, Mentally Ill and Missing Persons) Law, 5715-1955', the State has the right to remove children from their families when they are under high risk of physical or emotional abuse or lack living conditions for proper development. In 2005, 1,772 children at risk were removed from their homes. 662 of them were removed by court order pursuant to the 'Youth (Care and Supervision) Law, 5720-1960' (National Council for Children, 2006). No estimation of how many of them were children with disabilities was provided.
During 2004, 118 of 1,377 youths ages 18 and below who were in the care of the Rehabilitation Department at the Ministry of Welfare were removed from their homes: 12 to foster families, 28 to post-hospitalization institutions. 78 out of 163 children bearing certification of blindness were transferred to institutions. Of 3,265 children with intellectual disabilities ages 18 and below in the care of the Retarded Persons' Unit at the Ministry of Welfare, 821 were transferred to institutions and 155 to foster families. Of 159 children with autism who were in the care of the Autism Unit at the Ministry of Welfare, 71 were transferred to institutions and one to a foster family (Feldman and Arianes, 2004).
Another aspect of family life is the ongoing process of clarifying the status of the parents versus the status of the family member with disabilities in making decisions about his/her life. It is a complicated and prolonged issue in every family (Arambala, De Kraai & Sales, 1993) and becomes especially challenging as the member with a disability who lives at home becomes an adult (Blacher, 2001). In many families of persons with disabilities the period of transition from childhood to adulthood is characterized by a growing feeling of stress and essential dilemmas about making decisions regarding everyday tasks and the future (Jordan & Dunlap, 2001; Thorin, Yovanoff & Irvin, 1996).
The organizations of persons with disabilities, especially psychological disabilities, which participated in writing the CRPD, opposed giving the family any status in the Convention, as the family, in their opinion, too often abuses the basic rights of members with disabilities by not listening and/or not considering their opinion—sometimes out of overprotection and sometimes due to the family care giving burden. This is most evident in family-instigated involuntary psychiatric treatment and hospitalization. Finally, the CRPD recognizes the importance of the family and its right to support, but only as a tool for promoting the rights of the member with disabilities, as set out in the Preamble, subsection (x), as follows: "[States Parties] Convinced that the family is the natural and fundamental group unit of society and is entitled to protection by society and the state, and that persons with disabilities and their family members should receive the necessary protection and assistance to enable families to contribute towards the full and equal enjoyment of the rights of persons with disabilities".
According to article 12(2) of the CRC: "[T]he child shall in particular be provided the opportunity to be heard in any judicial and administrative proceedings affecting the child, either directly, or through a representative or an appropriate body". The 'Family Affairs Court Law, 5755 — 1995' (Article 3(d)) went one step further and determined that a minor is allowed to file suit (in person or through a close friend) pertaining to any matter in which his/her rights might be severely infringed. Therefore, suits can be filed not only via a social worker acting on behalf of the State or by a parent, but also by the minor her/himself. As a result, a legal situation can be created in which the child seeks to actualize the 'rights of the child', whereas his/her parents or caretakers claim to be protecting the 'best interests of the child' although the minor disagrees. This conflict occurs very often in cases of removing the child from home, involuntary treatment or hospitalization, etc. which will be discussed later on.
The Right to Education
The right to education is the foundation for acquiring knowledge and developing personal and social values. It is a major source for developing tolerance and participatory democratic values provided by the general education system only when it is de facto available and accessible to all. Article 24 of the CRPD outlines a vision in which 'States Parties recognize the right of persons with disabilities to education with the view to realizing this right without discrimination and on the basis of equal rights opportunities. States Parties shall ensure an inclusive education at all levels and life long learning'. In order to achieve this vision the CRPD acknowledges the importance of supplying personal support, alternative modes, means and formats of learning, teaching and orientation as well as the importance of training teachers towards human rights based education and the ability to teach students of many kinds, including children with disabilities.
Israel has acknowledged the importance of education for all since its independence in 1948 by enacting the 'Mandatory Schooling Law, 5709 -1949' which was one of the first laws enacted by the Israeli parliament. The Law includes the prohibition of discrimination on the basis of sector, prohibits punishing students for actions or inaction by parents, and assures free schooling from the first day of kindergarten up until the last day of high school. In 1954, the 'State Education Law, 5713 — 1953' was enacted. It defines the school week and the systems of state education (regular and religious). In 1969, the 'Control of Schools Law, 5729-1969' was legislated. However, these laws were not sufficient in ensuring education for children with disabilities, who need special accommodations and assistance for their special needs. Only twenty years later was the 'Special Education Law, 5748 — 1988' enacted to ensure education modified to accommodate students with disabilities aged between 3 to 21 years old. In 1997, the 'Long Education Day and Enrichment Studies Law, 5757-1997' was enacted, and in 2002 the 'Inclusion Law'—the 7th Amendment to the Special Education Law. The goal of that amendment is to ensure the priority of inclusion over exclusion, assistance and accommodations required to integrate students with disabilities in mainstream educational institutions.
Another important aspect of enabling students with severe disabilities to actualize their right to education is the provision of accommodated transportation to school and back. The Safe Transportation for Children and Toddlers with Disabilities Law, 5754-1994' (amendment from 200214) and the 'Safe Transportation for Disabled Children and Toddlers (Rules and Tests for Entitlement to Transportation and Escort) Regulations, 5755 — 1995' obligate local authorities to supply this service. An additional crucial component is the accessibility of the school itself: The accessibility required by the 'Planning and Building Law, 5725 — 1965' has been implemented to a partial extent in regular schools, as it has in all other public areas (State Comptroller's Report, 2002; Him-Yuns, Fridman & Herkovitz, 2003). Only in March 2005 was the second Amendment to the Equality Law, termed 'the Accessibility Law', passed. Along with many other public services and facilities, it requires all new schools to be completely accessible and all existing schools to be made accessible in a limited fashion, until an individual student, parent or teacher with disabilities joins the school, upon which the requirements are upgraded, until the school is made fully accessible.
According to a report made by the European agency for developing special needs education (2005), European countries can be divided into those that have almost all students with disabilities integrated into regular education (Spain, Italy, Portugal, Sweden, Iceland and Norway), those that have two completely separate educational systems—regular education and special education (Switzerland and Belgium)—and those that combine the two (Denmark, France, Ireland, Luxembourg, Austria, Finland, Britain, Holland and Germany). Israel belongs to the third group of countries. The special education students constitute 2.6% of all the students in Israel. At the primary school level they constitute about 3.1% of all the students; in middle school about 2.8% of all students. About 44,000 learn in separate systems: 5,500 children go to special kindergartens, 17,300 to special classes in regular schools, and 16,141 to special schools. 40% of these students are children with learning disabilities. About 30,000 children receive special education services in regular schools coordinated by regional support centers (Ministry of Education, 2005).
In 2005, the special education system cost 9% of the general education budget. A regular student in Israel is budgeted at about 22 thousand NIS a year on the average. A student with a moderate disability that learns in a regular class receives an "integration basket" and services at a cost of 34 thousand shekels, compared to a cost of about 73 thousand shekels in the special education system. By comparison, in the United States, the expenditure on special education consists of 21% of the expenditure on education: a child with a disability is budgeted at about $12,500 a year on average. In Britain, the budget for children with a disability ranges from 4,000 to 29 thousand dollars a year. In Ontario, Canada, as in Holland, the budget follows the child. In Australia, where a school year consists of four semesters, the budget 'transfers with the child' even if he leaves school after only one semester (Bels, 2006).
As Peters (2007) has noted, comparing 12 major international policy documents, in Israel the reality is one of "conflicted discourses and fragmented, reinterpreted, and reworked policies towards rights of individuals with disabilities in relation to education for all" (p. 98). This discourse focuses mainly on the question of what the best interests of the child really are, especially concerning children with severe intellectual and autistic disabilities and their non- disabled classmates (McCarthy and Soodak, 2007). The same debate is taking place on the teachers' level. Studies show that their willingness to integrate students with physical or sensorial disabilities far exceeds their willingness to integrate students with behavioral and intellectual challenges who, in their opinion, do not benefit from inclusive learning (Budinyuk, 2003). In addition, the latter create a complex dilemma for schools, as they must balance their duty to provide a safe working and learning environment with their duty to provide a free and appropriate public education to students with disabilities (Bon, Faircloth, LeTendre, 2006). Reiter (2004) raises the dilemma of a tradeoff between academic achievements and the social "price" paid for them, in a report of better academic and employment achievements in adulthood along with a high level of loneliness that characterizes many students with disabilities who were integrated into the regular educational system (Bauminger, Shulman, Agam, 2003; Mirta and Wilber, 2004; Reiter and Lapidot-Lefler, 2007).
A special challenge is the status of students with disabilities from the Arab sector. The law mandates that all of them attend school15. However, according to Course-Neff (2004) and the Human Rights Watch (2001), the schools of Israeli Arab children, in general, and with disabilities, in particular, are a world apart in quality from the public schools serving Israel's majority population. They are often overcrowded, employ less qualified teachers and therapists, are understaffed, poorly built, badly maintained, or are simply unavailable. These schools offer fewer facilities and educational opportunities than other Israeli children have. Arab children with disabilities are particularly marginalized.
Organizations of parents, such as; "Yated" for children with Down syndrome, "Alut" for children with autism, "Ofek Leyeladenu" for blind children, together with "Bizchut", and lately with organizations of persons with disabilities, like "Mate Hamaavak", have been very active in confronting the delay in implementation of the declared "equity policy" of the Ministry of Education and those who still believe in segregated education for the most severely disabled students. These organizations fight actively for full inclusive education for all through mutual support, negotiating with the Ministry to achieve more and more rights. If this does not work, they use the media, the parliament ("Knesset"), the Supreme Court16 (Feldman, 2007), etc. The involvement of organizations from the Arab sector has been increasing. Today, 11% of the 515 non-governmental organizations active in the area of disabilities in Israel are from the Arab, Druse and Beduin sectors. Most of them were established during the last five years (Alon and Giron, 2007). As happens elsewhere (Kluth, Biklen, English-Sand, Smukler, 2007), currently the integration of students with severe disabilities within the regular educational system still occurs primarily on a one by one basis, initiated by parents according to their capability to contend with the educational authorities, convince school principals and educators to agree to integrate the child into their school and class, cope with the child's' social isolation, and finance unpaid for or not covered appropriate support services. Thus the option of integrating students from low socioeconomic level families into the regular education system, as of now, is quite limited (State Comptrollers' report, 2002). However, as happens elsewhere (Nagle, Yunker, Malmgren, Kimber, 2006), most of the Israeli teachers who already teach students with disabilities in regular classes seem willing to tackle challenges to the best of their abilities and recognize that students with disabilities are a vital part of the educational process.
The current situation is likely to change dramatically when two new amendments are fully implemented: the "Inclusion Law" and the "Accessibility Law", which were imposed on the educational system by the parliament and the civil society. They assure inclusive education as the preferred choice by ensuring personal assistance, fully accessible schools, and fully accessible learning accessories for students with disabilities also in regular classes.
The Right to Health
Article 25 of the CRPD proclaims the right of persons with disabilities to enjoy medical and paramedical treatment at the highest possible standard and without disability-based discrimination. It is the obligation of party States to ensure that the health system will be available, accessible and age-sensitive, and the obligation of professionals to give quality, ethical and human rights based services.
In Israel all citizens are insured under the 'State Health Insurance Law, 5754 — 1994'. According to the law, an interdisciplinary team shall provide a diagnosis and medical treatment of somatic and psychosomatic impairments to all. Children with disabilities until the age of six are entitled to development-related early detection, diagnosis and treatment services to be supplied by an interdisciplinary team including a child neurologist, psychologist, physiotherapist, social worker, speech and occupational therapists.
However, despite a relatively structured "developmental basket", Strosberg, Sandler-Lef and Naon (2000) found that each of four Health Care Funds ("Kupat Holim") that supply statutory health services has a different interpretation of the law. As a result, there is inequality in the scope of services, such as the number of treatments a child with a developmental disability will receive, etc. There are also groups, mostly in the geographical periphery, that are not covered either by the State Health Insurance Law or by the Special Education Law, under which additional paramedical services within special education kindergartens have to be supplied.
Children are also entitled to speech therapy and interdisciplinary treatment to improve learning disabilities, minimal brain dysfunction, dysfunctions of language and speech, communication, motor difficulties, etc. The Ministry of Health participates in financing the purchase of mobility, seeing and hearing aids, diagnosis of mobility disability, purchase of disabled-accessible vehicles, and provision of disabled parking permits.
Another relevant aspect of human rights pertaining to health care is defined by article 15 of the CRPD, which refers to the obligation of party States to ensure the freedom of persons with disabilities from torture, cruelty in treatment or inhumane punishment. Clear steps have to be taken to prevent scientific and medical experiments performed without informed consent and to prevent treatments that harm the individual and are of an inhuman nature. This issue has been discussed in depth since 1964, the year the 'Declaration of Helsinki' was initiated and drafted by the World Medical Association with the aim of defining ethical guidelines for carrying out medical experiments on human beings. The Declaration of Helsinki acknowledges the crucial value of research in advancing the ability of medicine to cure people, but also notes the crucial importance of planning and performing research according to clear and restricting rules.
According to the declaration, informed consent must be obtained from the participants of an experiment and/or their guardians after they are fully informed regarding the experiment, its risks, and its benefits. The procedure must also include suitable insurance coverage of the participant. The issue was regulated in Israel solely by the 'Peoples' Health (Medical Experiments On Human Beings) Regulations, 5741 — 1980' and the additions and amendments thereto until 1996, when the relevant 'Patients' Rights Law, 5756 — 1996' was enacted, and in 2006 the 'Procedure for Medical Experimentation on Human Beings — 2006' as well. In accordance with the above Regulations, special 'Helsinki committees' were established in all medical and academic institutions in order to approve and supervise research in this regard.
The question of receiving informed consent from children, including children with disabilities, in order to enable them to participate in a study, is even more complex. On the one hand children are legally unable to give informed consent, but on the other hand more harm may be caused if there is no research that may help to treat the diseases afflicting them. The 'Declaration of Helsinki' clarifies that absent legal competence of the subject, informed consent can be received from her or his legal guardian. According to the 'Legal Capacity and Guardianship Law, 5722 - 1962' it is customary to obtain the consent of the child as well, after explaining to him what the research is about (Glick, 1999). Despite the above, hundreds of children are still subject to studies without their knowledge or the knowledge of their parents (State Comptrollers' Report, 2004).
According to the 'Patients' Rights Law, 5756 — 1996' the parents have the upper hand regarding health care decisions, and the 'material' relevant to the treatment becomes their property. This presents no problem when there is agreement between the parties. But there are complicated family situations, including cases of mental or physical abuse, which may create an ethical dilemma unless inability of the parents or their harmfulness to a child is duly determined and it becomes obvious that the 'needy minor' must be protected from the interference or involvement of the parents in the treatment (Goldberg, 2003). A minor can also ask to receive treatment without the knowledge of his parents, e.g. in cases of termination of pregnancy or psychiatric hospitalization. According to the 'Detecting the Aids Virus in Minors Law, 5756 — 1996' minors have the right to perform an AIDS test while keeping the test and its results confidential.
A well-known Israeli judgment [HCJ 2098/91, Anonymous vs. Vardi Jak, et al. (1991)], deals with the tragic case of a seventeen year-old who had cancer. His parents requested that he undergo chemotherapy, but the teen refused the treatment due to the extreme pain and suffering the treatment caused him. In order to evade the treatments, the teen ran away from home, and when finally located by the police, the court determined according to articles 2(2) and 2(6) of the 'Youth Law (Care And Supervision) 5720 — 1960' that chemotherapy would be imposed upon the minor in a psychiatric ward, which is the only place set up to provide involuntary treatments. In his appeal to the Supreme Court, the minor applied to cancel the involuntary treatment. The court understood the main issue of the appeal not to be whether the will of the minor may overcome the will of his parents, but rather to convince the minor to give a chance to life by agreeing to undergo the treatment of first choice. Ultimately, the minor chose not to be treated, fled the country, and after a while passed away.
A more typical example of a conflict of interests between the person and his family is the matter of involuntary psychiatric treatment and hospitalization. According to the 'Treatment of Mentally Ill Persons Law, 5751-1991', a minor aged 15 and above cannot be psychiatrically hospitalized against his will, unless the hospitalization is approved by a court of law. The Law, as amended17 by the Youth (Care and Supervision) Law (Amendment 11), 5755 — 1995, allows the court to grant the wish of a minor age 15 or above to be hospitalized in a psychiatric institution, even if his parents object to it. In 2003, 1,099 children and teens were admitted in Israel into psychiatric hospitalization (158 of them were of ages 11 and below) — 624 boys and 475 girls. 254 of them were hospitalized involuntarily (forty of them were aged 17 and below)—166 boys and 88 girls (Mental Health Services report, 2004). Most of these minors were hospitalized at the request of the parents based on the claim of the 'best interest' of their child (Hattab, 1994). Lately, more and more human rights lawyers are involved in preventing unjustified involuntary psychiatric hospitalization and in demanding not to take the medical decisions for granted (Shnit Committee report, 2000).
Under public and judicial pressure, the Israeli Parliament approved the 5th Amendment18 to the Treatment of Mentally Ill Persons Law, 5751-1991 in 2004, giving the involuntarily hospitalized the option of legal representation by an attorney appointed by the Public Defender (concerning hospitalization ordered by the court) and by the Legal Aid (concerning a hospitalization order issued by the district psychiatrist), free of charge. Initial findings indicate that the legal representation causes higher patient involvement in hearings and higher rates of discharge, and the length of hospitalizations is shortened (Nahmani, Melamed, Robinstein & Alytzur, 2003). This legal arrangement, which has been gradually implemented, still does not apply to the pre-hospitalization stage, when the decision to give involuntary treatment is made, nor does it apply to children. These services are expected to be supplied only in the coming years.
The Right to Accessibility
The right to accessibility is perhaps the most revolutionary part of the vital human rights reform concerning persons with disabilities in Israel. It clarifies the fact that there is no chance for enjoyment of an equal, dignified, independent, safe and inclusive life for persons with disabilities without assuring physical, sensory, psychological and technological accessibility of places, services, products, programs, activities, etc. (The State Comptroller's report, 2002; Feldman, 2007).
In Israel, more than forty years of not implementing partial accessibility laws have clearly proved the critical need for full awareness and commitment by policy makers, planning professionals, technologists, economists and service suppliers of all kinds to link accessibility, inclusion and human rights of persons with disabilities (Feldman, Danieli-Lahav, Malul, and Silovsky, 2007). Despite the huge educational, medical, psychosocial, financial and legal investments, the absence of accessibility has left the majority of persons with disabilities invisible and behind others in most of areas of life (Feldman and Ben Moshe, 2006).
Only in March 2005, ten years after Shahar Botzer's appeal to the Supreme Court and seven years after the legislation of the Equal Rights Law, was the "Accessibility Chapter" passed. The Law requires assuring accessibility of new and existing public buildings, open spaces, infrastructure, products, and services provided to the public at large by the governmental, public or private sectors. It fully adopts the obligations defined two years later by Article 9 of the CRPD while adding other, much broader, obligations. These include more types of disabilities (physical, sensory, mental, intellectual, cognitive, developmental), application of the requirements to existing infrastructure and the private sector, a nd professionalization—that is, formal training and certification of accessibility professionals, approval by professionals required both to prove the meeting of accessibility standards and in order to be eligible for exemptions, and the requirement from suppliers of services to the public employing over 25 workers to appoint an "accessibility coordinator". In addition, the Equal Rights Commission was authorized to file criminal indictments as well as civil suits, and to issue administrative orders pertaining to accessibility. Since the process of implementation in Israel includes existing buildings, it shall be carried out over the course of 12 years, beginning with the approval of detailed secondary legislation. These regulations are being drafted by various governmental ministries, a process involving full participation of the civil society, planning professionals and the private sector, with the goal being to change the makeup of the Israeli environment and free market so as to become barrier free and fully inclusive.
The current article shows that Israel has invested much in legislation, budget and services for ensuring the social rights of children with disabilities in all areas of life. However, Israel still faces the challenges of carrying out the paradigm shift towards the human rights model in practice, and ensuring equal opportunities by abolishing the poverty of and discrimination against the geographical and social periphery, as well as ensuring inclusive education and accessible public areas and services to all. The commitment of the State to the international conventions and the external international monitoring process, a relevant legislation and an active court, an Israeli Equal Rights Commission and an active civil society increases the probability that the human right paradigm shift will be graduated in the future. However this process is not isolated from other perspectives of the Israeli life: the strength of the Israeli democracy, the national security status, the connection between religion and State, the commitment to welfare state conception in general, etc. All of this definitely will have an impact on the pace of implementation.
Two other factors in this scenario are crucial: the private sector, which already has recognized the economic potential of 25% of the Israeli society which is connected to disability issues in every day life; and from the other side, the Israeli academy, which is still far behind in understanding and adopting the human rights paradigm related to persons and children with disabilities. Only with the backing of the academy and the education system in establishing and teaching the language of human rights to current and future generations of leaders and educators, advocating, and protesting when needed will the paradigm shift in Israeli society be accomplished.
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- Natur, R. David, S. (2002). Arab Children with Special Needs: Needs and Answers. Jerusalem: Shatil: http://www.makom-m.cet.ac.il.
- Navon, S., Feygin, R, and Drori, M. (2001). Paving a Road. Tel Aviv: Ramot.
- Nachmani, D., Melamed, Y., Rubinstein, A., and Elitzur, A. (2003). Representation of Patients of Involuntary Hospitalization by Court Order in Regional Psychiatric Committees. The Medicine, 142, 141-145.
- Nelson-Brian, D. (2002). Victims, Who Are Persons with Developmental Disabilities, Break the Code of Silence. Issues in Special Education and Rehabilitation, 17(2), 7-15.
- Newacheck, P.W., Strickland, B., Shonkoff, J.P., Perrin, J.M., McPherson, M., McManus, M., et al. (1998). An epidemiologic profile of children with special health care needs. Pediatrics;102(1):117-23.
- Ophir, A. and Orenstein, D. (2001). The Equality for Persons with Disabilities Law — 1998: Emancipation at the End of the 20th Century. In: A. Barak, S. Adler, R. Ben Israel, Y. Eliasuf and N. Fineberg (editors), Book of Menahem Goldberg Tel Aviv: Sadan publishing. Pp. 43-87.
- Oren, D. and Dagan, N. (2007). The Legislative Revolution in the Area of Accessibility. In : D. Feldman, Y. Danieli Lahav, S. Haimovitz (eds.). The Accessibility of the Israeli Society to Persons with Disabilities on the threshold of the 21st century. Tel Aviv :Lapam Publication,. Pp. 135- 175.
- Ornoy Public Committee's report (2000). Criteria for Entitlement to Disabled Child Allowance. Jerusalem.
- Palestinian Central Bureau of Statistics. (1999) Palestinian Children — Issues and Statistics Annual Report—1999 Executive Summary.
- Panter-Brick, C. and Smith, M.T.(eds). (2000). Abandoned Children. Port Chester. NY: Cambridge University Press.
- Peters, S. (2007). Education for All?" A Historical Analysis of International Inclusive Education Policy and Individuals With Disabilities. Journal of Disability Policy Studies, 18(2): 98-108(11).
- Pilowsky, D. (1995). Psychopathology among children in family foster care. Psychiatric Services, 46 (9): 906-910.
- Reiter, S. (2004). Kinship Circles, for Breaking the Link between Disability and Loneliness. Haifa: Achva Publishment.
- Reiter, S. and Lapidot-Lefler, N (2007). Bullying Among Special Education Students With Intellectual Disabilities: Differences in Social Adjustment and Social Skills. Intellectual and Developmental Disabilities: 45(3):174-181.
- Richards, I. D. G., Bentley, H. B., & Glenny, A. (1999). A local congenital anomalies register: Monitoring preventive interventions. Journal of Public Health Medicine, 21(1): 37-40.
- Rimerman, A., and Katz, S. (2005). The Policy towards Persons with Disabilities in Israel: Central Issues. The Prevailing Opinion, 65, 3-7.
- Rimerman, A., and Artan-Bergman, T. (2005). The Legislation of Disabled Rights and Its Implementation in Israel, Future Tendencies and Directions. Social Security, 69, 11-39.
- Roberts, C.D. Stough, L.M. Parrish. L. H. (2002). The role of genetic counseling in the elective termination of pregnancies involving fetuses with disabilities. The Journal of Special Education. Vol. 36(1); 48 - 56
- Romney, S.C. Litrownik, A.J. Newton, R.R., Lau. A. (2006).The Relationship Between Child Disability and Living Arrangement in Child Welfare. Child Welfare.Vol. 85(6); 965-985.
- Sawyer, R.J., & Dubowitz, H. (1994). School performance of children in kinship care. CWW Abuse & Neglect, 18 (7): 587-597.
- Schmidt Public Committee's report (2006). Children and Youth at Risk. Ministry of Welfare, Jerusalem.
- Schor, E.L., & Erickson, C.G. (1994). Health care of children in foster care. Pediatrics, 93 (2): 335-339.
- Shahak, Y. (2003). Initiated Terminations of Pregnancy. Jerusalem: The Knesset, Center of Information and Research.
- Shnit Public Committee's report (2000). The Functioning of the Regional Psychiatric Committees. Jerusalem.
- Soodak, L. C. (2004. Parents and inclusive schooling: Advocating for and participating in the reform of special education In: S. Danforth & S. D. Taff (Eds.) Crucial reading in special education. Upper Saddle River, NJ: Pearson Education. pp. 260-273.
- Soodak, L. C, & Erwin, E. J. (2000). Valued member or tolerated participant: Parents' experiences in inclusive early childhood settings. The Journal of the Association for Persons with Severe Handicaps, 25, 29-41.
- Swart, E., Engelbrecht, P., Eloff, I., Pettipher, R., & Oswald, M. (2004). Developing inclusive school communities: Voices of parents of children with disabilities. Education as Change, 8(\): 80-108.
- Strosberg, N., Naon, D, Bar, S. and Morgenstein, B. (2004). Receivers of General Disability Allowances and of Work Injured: Characteristics and Needs in the Areas of Health, Physical and Emotional Functioning. Research report, Jerusalem: Joint — Brookdale Institute and the National Insurance Institute.
- Strosberg, N., Sandler-Lef, A., and Naon, D. (2000). Developmental Services for Children with Disabilities After the Application of the State Health Insurance Law, 1994. Research report, Jerusalem: Joint — Brookdale Institute and the National Insurance Institute.
- State Comptroller (2002). Integration of Persons with Disabilities in Society and at Work. Annual Report 52B for 2001 and the 2000 Fiscal Year. State Comptroller's Office, Jerusalem
- State Comptroller (2004). Ministry of Health: Impaired Inspection on medical human experiments. Annual Report 55B. State Comptroller's Office, Jerusalem
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Conventions and Declarations
- Convention on Civil and Political Rights, 1966
- Convention on Economical, Social and Cultural Rights, 1966.
- Convention on the Rights of the Child, 1989.
- Convention on Access to Information, Public Participation in Decision-Making and Access to Justice in Environmental Matters, 1998
- Convention on the Rights of Persons with Disabilities, 2007.
- Declaration of Helsinki, 1964
- UN Declaration on Bio-ethics and Human Rights, 2006
- The Equal Rights of Persons with Disabilities (Amendment) (Accessibility, Housing in the Community and Personal Assistance, Culture, Leisure and Sport, Education and Knowledge, Legal System, Special Needs and Information) Law, 5761 — 2000
- Anatomy and Pathology Law
- Anatomy and Pathology Law (Amendment), 5741-1980.
- Control of Schools Law, 5729-1969.
- Detecting the Aids Virus in Minors Law, 5756 — 1996.
- Equal Rights for Persons with Disabilities Law, 5758 — 1998.
- Family Affairs Court Law, 5755 — 1995.
- Free Education for Sick Children Law, 5761 — 2001
- Investigation and Testimonial Procedures (Adjustment for Persons with an Intellectual or Mental Disability) Law, 5766- 2005.
- Land Law, 5729-1969
- Land Law (Amendment 23), 5762- 2001 (Adjustments for a Person with Disabilities).
- Legal Capacity and Guardianship Law, 5722 — 1962.
- Legal Capacity and Guardianship Law (Amendment), 5725 — 1965.
- Long Education Day and Enrichment Studies Law, 5757-1997
- Mandatory Schooling Law, 5709 -1949.
- National Insurance Law [Consolidated Version], 5755 — 1995.
- National Insurance Law (Amendment 13), 5733-1973
- Patients' Rights Law, 5756 — 1996.
- Penal Law, 5737 — 1977
- Penal Law (Amendment 26), 5750-1989 (Chapter F1: Harming Minors and Helpless Persons)
- Penal Law (Amendment 59), 5761-2001 (Section 361)
- Planning and Building Law, 5725 — 1965.
- Planning and Building Law (Amendment 61), 5762 - 2002
- Prevention of Family Violence Law, 5751-1991.
- Prohibition of Discrimination in Products, Services, Entrance to Places of Entertainment and Public Places Law, 5761 — 2000.
- Rehabilitative Day Care Centers Law, 5760 — 2000.
- Safe Transportation for Children and Toddlers with Disabilities Law, 5754-1994
- Safe Transportation for Children and Toddlers with Disabilities Law (Amendment 2), 5762-2002.
- Special Education Law, 5748 — 1988.
- Special Education Law (Amendment 7), 5763-2002 (Chapter D1: Integration Of A Child With Special Needs in Regular Education)
- State Education Law, 5713 — 1953.
- State Health Insurance Law, 5754 — 1994.
- Television Broadcasts (Subtitles and Sign Language) Law, 5765 — 2005.
- Treatment of Mentally Ill Persons Law, 5751-1991.
- Treatment of Mentally Ill Persons Law (Amendment 5), 5764 — 2004.
- Welfare (Care of Retarded Persons) Law, 5729 -1969.
- Welfare (Care of Retarded Persons) Law (Amendment 4), 5760-2000
- Welfare (Legal Procedures Regarding Minors, Mentally Ill and Missing Persons) Law, 5715-1955.
- Youth (Care and Supervision) Law, 5720-1960.
- Youth (Care and Supervision) Law (Amendment 11), 5755 — 1995
- Governmental Resolution 477 of September 12th, 2006, regarding the recommendations rendered by the Public Committee, headed by Professor Hillel Shmid, to examine the situation of children and teens at risk and in distress.
- HCJ 506/88 Yael Shefer and her Mother vs. State of Israel (1993).
- HCJ 7081/93 Shahar Botzer vs. Macabim-Reut Local Council (1996).
- HCJ 2599/00 Yated— The Association of Parents to Children with Down Syndrome vs. Ministry of Education (2002).
- HCJ 6973/03 Martziano vs. Ministry of Finance (2003).
- HCJ 7443/03, and 7448/03 Yated et al., vs. Ministry of Education et al. (2004).
- HCJ 518/82 Dr. Zeitzov vs. Katz (1986).
- HCJ 2098/91, Anonymous vs. Vardi Jak, et al (1991)),
Regulations and Procedures
- Peoples' Health (Medical Experiments on Human Beings) Regulations, 5741 — 1980.
- Procedure for Medical Experimenting on Humans — 2006
- Social Work Regulations No. 14.21 from 1992
- Safe Transportation for Disabled Children and Toddlers (Rules and Tests for Entitlement to Transportation and Escort) Regulations , 5755 — 1995
I would like to thank Mr. Yisrael Haber for his assistance
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About 80 percent are Muslim, including the Bedouin and a small number of Circassians; about one-tenth are Christian, and slightly fewer are Druze.
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According to the Palestinian Central Bureau of Statistics (1999), 11.2% of Palestinian children are disabled. Movement disorders are the most commonly reported disabilities for children (23%), followed by mental (15%), speech (10%), multiple (10%), and sight (9.5%) disabilities
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Welfare (Care of Retarded Persons) Law (Amendment 4), 5760-2000
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Special Education Law (Amendment 7), 5763-2002
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Land Law (Amendment 23), 5762- 2001
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Planning and Building Law (Amendment 61), 5762-2002
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Wikipedia, wrongful birth (in Hebrew)
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The hospitals are paid either by the Sick Funds or by the clients. Who is paying depends on what kind of a test has been done, how much at risk the parents are and what kind of insurance (obligatory and complementary) they have. The special expenses of parents on genetic and prenatal testing might move from several hundreds to several thousands IS per pregnancy, depends how "safe" they would like to be.
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Penal Law (Amendment 59), 5761-2001 (Section 361)
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National Insurance Law (Amendment 13), 5733-1973
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Then known as the National Insurance Law [Consolidated Version], 5728-1968
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Legal Capacity and Guardianship Law (Amendment), 5725 — 1965.
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Safe Transportation for Children and Toddlers with Disabilities Law (Amendment 2), 5762-2002
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According to the Palestinian Central Bureau of Statistics (1999) only 41.7% of children with disability, in the Palestinian Territory, attend school.
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Such as HCJ 7443/03, 7448/03 Yated, et al. vs. Ministry of Education, et al (2004).; HCJ 2599/00 Yated — An Association of the Parents of Children with Down Syndrome vs. Ministry of Education (2002) ; HCJ 6973/03.
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Such as HCJ 7443/03, 7448/03 Yated, et al. vs. Ministry of Education, et al (2004).; HCJ 2599/00 Yated — An Association of the Parents of Children with Down Syndrome vs. Ministry of Education (2002) ; HCJ 6973/03, Martziano vs. Ministry of Finance, et al. (2003).
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Treatment of Mentally Ill Persons Law (Amendment 3), 5755 — 1995
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