Russian law and law enforcement practice still fail to live up to the country’s obligations to create equal rights and opportunities for the self-realization of children with disabilities guaranteed by the Convention on the Rights of Persons with Disabilities, the law “On the Social Protection of Persons with Disabilities,” and the Russian Constitution. Even though government representatives repeatedly proclaim their desire to bring legal guarantees for disabled children to participate in socio-economic and social activities closer to the Convention’s standards, in practice amendments and improvements made to laws and social adaptation and medical assistance programs actually introduce a number of restrictions that violate the rights of these children and increase their isolation from society.
In March 2019, the Russian Ministry of Health developed a new procedure for arranging medical rehabilitation for children with disabilities. Specialists had a scathing reaction to the draft immediately following the public hearings. Stating that the text did not correspond to reality and contained numerous contradictions in its terminology and semantics, they added that there could be dangerous consequences for children if the draft was adopted.
According to experts, the main problem is that the draft lacks special guarantees for children who do not have “the potential for rehabilitation.” In this way, the new rules effectively leave out entire groups of children suffering from severe forms of ICP and other illnesses that are difficult to treat without support.
Under the current procedure, “patients with marked functional impairments who are fully dependent on outside assistance for self-care, movement, and communication and have no chance of recovering functions (potential for rehabilitation) confirmed by the results of an examination” are offered measures to maintain their existing level of health. Under the new procedure, “children undergo medical rehabilitation on the basis of main categories of illness and nosological classification…if there is potential for rehabilitation (with the exception of children with no potential for rehabilitation who have been ill for less than one year).” This clause of the program is not in line with Article 40 of the federal law “On the Framework for Protecting the Health of Citizens of the Russian Federation,” under which medical rehabilitation is a complex of medical and psychological measures aimed at full or partial restoration of impaired functions, maintenance of bodily functions, prevention, early detection and correction of possible functional impairments, prevention and reduction of possible disability, improvement in quality of life, and retention of the patient’s ability to work and integrate into society. The text of the law makes it clear that the goals of medical rehabilitation are not simply full or partial restoration of impaired functions, but support of these functions even for a person whose bodily functions cannot be rehabilitated. Therefore, even if we ignore the moral aspects of refusing to provide assistance to children suffering from incurable diseases, we can say that the new procedure is, at a minimum, discriminatory in nature and is not in line with the foundational legal document in the sphere of health protection.
Specialists also have questions about the way in which potential for rehabilitation is assessed. For children, the possibility for “socialization and re-socialization” is assessed, but the program does not specify who will assess these possibilities, how they will be assessed within the framework of medical rehabilitation, and what the absence of these possibilities will entail.
Another novelty which has been found unacceptable by medical workers and human rights defenders is the introduction of the course-based rehabilitation of children. The course approach envisages that the full or partial restoration of lost or impaired functions to the organism or to an individual organ is possible with temporary assistance. However, children with serious mental or motor impairments are in need of a constant process of rehabilitation and the new program does not take their needs into account.
In addition to this, the first two courses of rehabilitation can only be provided at in-patient facilities or not at all. This rule violates the right of a child to rehabilitation at home, limits and violates guarantees to rehabilitation, and forces parents to refuse rehabilitation in cases where children do not want to or cannot go to the hospital for certain reasons.
Several years ago, the concept of “abilitation” was introduced as part of a drive to bring all the foundational laws for protecting the rights of disabled persons in Russia into line with Convention on the Rights of Persons with Disabilities. This concept encompasses the system and processes of shaping the abilities of people with disabilities to participate in everyday, social, public, and other activities. This term was also added to the name of individual rehabilitation programs offered to persons with disabilities, which is now known as “individual program of rehabilitation and abilitation” instead of “individual program of rehabilitation.” The introduction of this term into Russian laws and medical programs assumes the creation of special conditions under which a child can develop the functions and abilities that have not been developed in that child since birth. However, Russia has very few specialists who can conceive of developing and implementing these kinds of programs, so their application remains on paper.
To a certain extent, this approach characterizes Russia’s principles for implementing the Convention: it introduces the Convention’s standards and terminology, but it lacks any real potential for their application. For example, it does not provide for the training of specialists capable of implementing these standards in Russian medical institutions.
The authors of the new procedure for organizing the medical rehabilitation of children with disabilities went even further by not even mentioning abilitation in the draft document, even though it is abilitation and not rehabilitation that is particularly important to children. Instead, under the proposed rules children with congenital disabilities will be categorized as “without the potential for rehabilitation.” No measures for rehabilitation are envisaged for these children.
Some specialists see these as an intentional attempt by officials to reduce financing for expensive and extended procedures for children with complicated diagnoses. The need to introduce a new procedure is comparable to the tightening of procedures for recognizing disability groups in 2015, when medical committees started assigning disabled persons to less serious groups at their own discretion with the full understanding that this would result in a reduction in benefits and a poorer quality of life for the disabled person. The new rehabilitation rules follow the same logic: instead of providing additional guarantees for children, these rules create the ability to deny assistance.
On April 3, 2019, 21 field-specific NGOs send Dmitry Medvedev a collective letter asking him to postpone approval of the new procedure for organizing medical rehabilitation for children with disabilities. The letter notes that “if the procedure is approved in its proposed version, this will set Russia back decades, mark a return to pointless and outdated techniques, and lead the country further away from effective occupational therapy, physical rehabilitation, and kinesiotherapy, from evidence-based medicine, and from accessible treatment.”
The draft document has already been presented at public hearings, which resulted in significant amendments to the text. Representatives from the Ministry of Health made assurances that “zero potential for rehabilitation” will be removed from the draft and that the rehabilitation process will be family oriented.
In addition to the violations of the rights of children with disabilities to medical care, which is only one part of the rehabilitation process, similar complexities arise with other types of rehabilitation, including in the area of education, that are guaranteed by the Convention.
Because most Russian institutions cannot offer special conditions or qualified personnel, children with disabilities are not accepted at daycare centers or schools. To make matters worse, the administrations of schools and preschools rarely create these conditions, so parents have no other choice than to prepare and educate their children on their own. For example, daycare centers do not have specially trained pedagogues capable of communicating with disabled children and can only offer parents the opportunity to transfer to specialized children’s institutions. In most cases, regular daycare centers do not accept children who cannot move or care for themselves unaided, or they accept these children but refuse to take responsibility for their support, upbringing, and education. Instead, they require parents to come to the center and work independently with their children. In addition, most daycare centers still do not provide the special food that children with various illnesses require, so they make parents to come to daycare centers during meal hours with the food their children need and feed them.
Directors of daycare centers do not officially have the right to refuse parents and institute these rules because they are obligated to create all the necessary conditions for children with disabilities, but in reality parents have to face the fact that the absence of proper conditions may have a negative impact on a child’s health.
The only option for parents who have received these rejections is to search for specialized daycare centers, which may not exist in small towns, or keep their children at home because they do not want to risk registering their child at an institution that could bring harm to the child.
A similar problem exists in schools. Even though the laws “On Education” and “On the Social Protection of Disabled Persons in the Russian Federation” guarantee that the required conditions for education must be created for disabled persons, the right of children with disabilities to inclusive education in Russian schools is often violated.
Parents who have a doctor’s note about a disability and try to enroll their children at regular schools are regularly rejected due to lack of special conditions (ramps, elevators, bathrooms, and so forth) and qualified tutors trained to handle the educational process for children with disabilities. In these cases, school principals often try to persuade parents to transfer their children to so-called “correctional” schools or to home schooling, even though a child’s diagnosis may not contain grounds for transfer to home schooling, since this form of instruction is only used in extreme cases (presence of infectious diseases, serious mental impairments, and so forth).
Generally, school principals only tell parents about the positive aspects of homeschooling, which includes an individual study plan and workload that give children the chance to learn at their own pace. However, they make no mention of the consequences of isolating children and adolescents from society or of the poor quality of education, which is handled by teachers who are not properly prepared and are not capable of skillfully and professionally planning out psychological and pedagogical support for children with disabilities. In many cases these children, particularly seriously ill children, are taught following the simplest program, which does not give them the opportunity to master skills for even the most basic professions and, accordingly, find work in the future.
There are also cases where parents themselves want to transfer their children to homeschooling, but decisions on this, like decisions to refuse to allow a child to enroll at a school, are not in line with the law and also contradict the child’s best interests by violating the procedure for a child’s socialization and by increasing their isolation from society.
According to information from the Education Committee, approximately 50 general education schools are operating in Saint Petersburg that can provide conditions for inclusive education. However, NGOs working on the rights of disabled persons believe that this number is inflated. A section on educating children with disabilities can be found on the websites of most schools, but this does not mean that these schools accept all children. There have been cases where visually impaired students and wheelchair users have been accepted, while children with serious mental impairments (for example, forms of autism) are rejected for the abovementioned reasons: lack of conditions and specialists.
Only several schools in Saint Petersburg are currently fully inclusive. This means that, in spite of existing guarantees, the right to education for all children with disabilities is declarative in nature and not practiced in reality.