Overcoming bureaucracy to help people with disabilities

Kesher Association calls to allow those with special needs to exercise their rights.

 THE WRITER lectures on the rights of families with special needs. (photo credit: KESHER ASSOCIATION)
THE WRITER lectures on the rights of families with special needs.
(photo credit: KESHER ASSOCIATION)

So, how many bureaucratic processes is a family with a child with special needs required to undergo in order to receive basic services? 

Unfortunately, when it comes to examining how the state provides a solution to about 330,000 families in Israel for children with disabilities, it is important to examine precisely this question.

True, if anyone were to look at the laws in the State of Israel, he/she would be overwhelmed. Apparently, there is no area in the life of a family for children with disabilities in Israel that does not have a service for families: benefits, health, education, rights with the employer and more. Why “apparently?” 

Because our bureaucracy in Israel is unmanageable, and in the cases of families with children with disabilities, it becomes a long and disheartening journey in a system that lacks professional logic, is divided among many bodies and is cumbersome. Special-needs families quickly realize that even though each body is committed to helping them, in the end they are left alone.

How many bureaucratic processes does a special family have to undergo? Consider a family for a child with a multiple disability, for example both a physical mobility disability and a mental disorder. Such a family may be entitled to multiple benefits. However, to realize all of these benefits, each has to be procured from a different body.

 Jerusalem’s new Shalva National Center for children with disabilities. (credit: SHALVA) Jerusalem’s new Shalva National Center for children with disabilities. (credit: SHALVA)

Diagnosis and treatments

For diagnosis and treatments, the family will need to apply to the Development of the Child Department in the health fund (kupat holim), via their family doctor.

For rehabilitation and mobility, an application needs to be made to a different committee in the Health Ministry, together with the health fund.

To receive recognition of the disabled child and associated benefit, the family needs to submit an application to the committee in the National Insurance Institute (Bituah Leumi) 

If the family requires mobile benefits, then only the Health Ministry is empowered to both determine percentages and to check the need for an enlarged vehicle and accessories.

To receive welfare services you must appear before a welfare committee.

Finally, if the family requires assisted living or special residence, an application needs to be made to another committee to receive such a residence.

If you are of educational age, then a committee for accessibility, a committee for special education services, a committee for transportation and so on, are involved. For housing, there is the Housing Adjustment Committee. The list goes on. The above example is typical of the multiple bodies with which the special-needs family will need to engage to realize their rights to address the needs of the special child.

The Kesher Association – the Home for Special Families – was established almost three decades ago with the aim of helping special families cope with day-to-day difficulties, both on the emotional and practical levels.

We manage a whole array of professionals and volunteers who receive hundreds of inquiries a month from families who have had difficulty understanding to which rights they are entitled, and even when they already understand, often encounter endless difficulties in obtaining those rights. At Kesher, we provide legal assistance, contacting the relevant authorities in accordance with the ability of the same family who applied, to cope with the situation. 

We will assist the families in their applications, whether these are departments in the local education authorities, in health funds or hospitals that are supposed to provide medical and paramedical treatments and, of course, with municipal and interurban welfare agencies related to completing assistance and care in the same family. In the event that any of these bodies delay or refuse to provide the treatments, Kesher will intervene and ensure that the families get the maximum benefits provided for by the law.

Currently (and unfortunately), at Kesher, we have reached a situation that more than 40% of the special-needs families need legal assistance to obtain only the most basic rights:

Should the child with a disability go on an annual trip? Does the child need a diagnosis from the health fund?

There is a diagnosis and now the child is entitled to treatments that are offered by law.

Is the child eligible for assistance in the educational framework but unable to find the assistance?

Almost all the things that families in Israel take for granted, such as health, education and welfare, are precisely where special families are obliged to find a lawyer who will intervene on their behalf in confrontation with the various bodies to obtain their rights.

How does it happen that precisely in families whose challenges are complex in every way, bureaucracy is so prominent regarding rights that are enshrined in the law? Why, instead of a family receiving the answers it deserves, it finds itself in a state of attrition and with endless struggles when encountering the authorities?

The truth consists of many aspects, but we will mention just three.

The first: in 2022, there is still no concept that seeks to present in advance (as a service) the rights that come to the family. The existing approach is that the family is solely responsible to know its rights, to understand the bureaucratic mesh and to act within it. In the current age where any other simple Internet search maps out the services suitable for an individual, a change in approach is required by which the service providers seek out the family and not the other way around. At Kesher we do this every day and it works.

The second is the lack of tools for cooperation between the various bodies that deal with the family and are located in separate systems, often using separate methods. Thus, placement and transportation in special education involve a government ministry together with different authorities, and in different departments, with no apparatus for common interaction.

For example, the placement system in special education frameworks. On the one hand, the Education Ministry allows parents to choose special education frameworks according to the type of disability of their children, and on the other hand, it does not implement the existence of a variety of options among all municipal educational authorities. Hence, an education authority that does not have a suitable framework needs to find a framework in another authority. 

However, instead of there being cooperation among the authorities, the national Education Ministry and various educational bodies in other municipalities, the local authority can only search other authorities within its own district, hoping to find a vacancy. 

This inefficient and lengthy process often results in last-minute assignments on the eve of the start of the school year. In the event that no suitable framework has been found, the parents must contact the authority that did not have an answer in the first place. 

Collaborative tools abound, and these are not just roundtables or peer talk. Today we are talking about computerized systems, procedures with an advanced concept of integration, and a change in a professional concept for working together.

The third aspect is that there is no systemic responsibility for the repressive bureaucratic mechanisms in the country, not in research on the subject, not in a single, authoritative  point of contact in the Prime Minister’s Office vis-à-vis all enforcement agencies, nor on the aspect of monetary compensation for families experiencing bureaucratic abuse. Once the bureaucratic system is obliged to pay for bureaucratic abuse it produces for the family, the way will soon be paved for solutions.

The challenges facing the families for which we care are complex even without the difficulties that the bureaucracy in Israel raises. Every family deserves a “basket” of assistance – this is their civil right. The way in which the state deals with special families in many cases it is both beyond comprehension and even outrageous. We, at Kesher, hope we can change the reality for them and find the best way to make it easier for them. But, no less important, to arrive at a day when families will receive rights and not bureaucracy.

The writer is director of the Center for Assistance and Exercise of Rights at the Kesher Association for Special Families, a center that cares for and assists thousands of families with children and adults with disabilities, in a humane and accessible response to families.