It’s Hard to Be a Working Parent. It’s Even Harder When You Are the Parent of a Child with Disabilities

קריקטורה של אדם רץ בין עבודה למשפחה Charicature of man balancing between work and family

Most parents find juggling a career and raising children challenging, however for parents of a child with disabilities, the challenge is even more complex. Employers must understand and accept the complexity of the situation.

By Shlomit Grayevsky

A lot has been written about the difficulties working parents face as they juggle career and family. This was especially prominent when many of us were forced to stay home with children due to COVID quarantines and illness. The reality of the situation is not simple, and parents must often pay a steep price, one that manifests itself in personal, professional and economic privation. Yet, another, less-discussed challenge exists, a challenge wrought with the very same difficulties of juggling responsibility.  For parents of children with disabilities, juggling employment and family presents an even greater problem, one that begged solutions prior to the onset of the Corona pandemic.  The challenges and attendant complexities faced by these parents accompany them from the moment they discover that their child is challenged with a life-long disability.

Few are the parents who never had to leave work in the middle of the day to take care of a sick child, cancel an appointment or modify plans of any kind. Among parents of children with disabilities, such situations occur with a much greater frequency than among their counterparts, parents of children without disabilities, forcing parents into problematic complexities. On the one hand, parental responsibility demands that they take care of their child. On the other hand, the multiplicity of emergency situations disrupts the routine of their lives, frequently marking their family situation as an occupational liability. At work, parents of children with disabilities may choose to forego projects and tasks, resulting in failure to meet targets and goals, hampering their ability to move forward to more senior positions, restricting opportunities for better financial remuneration and more.

It is important to note the existence of a corresponding personal price. Parents of a child with disabilities who have studied and trained in a specific field seek to develop and progress in their area of expertise in the same way as any other person in a similar position.  However, as a result of the reality forced upon them, many times these parents have to compromise in the type or extent of work they do. Advanced planning becomes a virtually impossible task. Scheduling is always considered temporary. Parents of a child with disabilities constantly live lives of unpredictable routine.

In the majority of cases, when a child with disabilities gets hurt or needs assistance, the care they need can only be provided through inpatient or community medical services. The danger to the child’s health is in accordance. Parents urgently summoned from work to deal with such issues on a regular basis sink into unfathomable dilemmas. At the special education school in ADI Jerusalem, staff frequently encounters situations in which parents choose not to leave work despite real-time information that their child requires medical assistance or evacuation to the ER. Many parents experience feelings of awkwardness vis-à-vis employers in light of their frequent absences. We often encounter situations in which parents not only request, but insist, on keeping the child in school, claiming that the child’s medical situation is well known and does not require emergency care. That, at least, is what they want to believe. They simply want to exhaust all possibilities to avoid upsetting their daily routine.

Economic challenges facing parents of children with disabilities lend added complications to an already complex situation. Expenses for constant medical care, purchase of special food and appropriate equipment can reach thousands and tens of thousands of shekels. Additionally, parents are often unexpectedly required to lay out large sums of money due to sudden medical complications that require treatments and medications not included in the government health basket. Purchase of new equipment usually entails a drawn-out process for approval before a medical committee, a route requiring intervention by lawyers or agencies specializing in providing assistance with bureaucratic red-tape, generating yet more expenses for the family.

This reality creates a circle. Fear of being absent from work and the resulting economic harm stems from the increased financial obligations needed to care for their child. If parents are unable to meet those obligations, they are at a loss for help.

Limited maneuverability poses yet another issue that compounds the difficulty faced by parents. As opposed to parents of children without disabilities, who, when necessary, can usually find alternate solutions to suddenly leaving work by making arrangements with family members, caregivers or neighbors, parents of children with disabilities face a much more complex situation. They cannot depend on help from other people, as their child is dependent upon them and on their familiarity with the schedules and requisite special care equipment needed for their child’s care. People lacking the requisite experience or knowledge cannot just step in to take care of the child with disabilities.

Employers must display more consideration for the complex situations faced by parents of children with disabilities.  They must understand that everyone involved is dealing with a routine that is anything but routine, a reality not easy for anyone. They must take into account that the special parents who they employ, people whose challenges were forced upon them, have professional value, and their advantages can come to fruition by finding flexible solutions that make employment goals achievable.

Parents of children with disabilities deserve equal opportunities to complete professional gaps created by absences related to child care.

Shlomit Grayevsky is CEO of ADI Jerusalem. This article was first published in Hebrew in April 2022.

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