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The Family the Family and Medical Leave Act Leaves Out

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No man is an island unto themselves entire of itself; every man is a piece of the continent, a part of the main. —John Donne

To me, never was the above statement more true than when it is applied to a family with disabilities. I am a disabled parent with a rare genetic condition. This same condition has been passed down to my children. Thus our family has become a complicated spider web of cared for and caretaker, roles which can all shift with the slightest whims of our syndrome.

In our family there are no one person’s issues. While one person may be having more symptoms at the moment, those issues or an entirely different set of never-before-dealt-with symptoms can pop up for another family member the very next day. Whoever is dealing with issues, whether old or new, there is one thing we can all be sure of. Whatever is affecting one person will reverberate throughout our family’s tangled genetic web.

Whether it’s a need for transportation because I can’t drive, rescheduling an appointment because someone’s needs are more pressing, or someone having to pick up a prescription on their way to work, our genes have inevitably tied us together. This disability boat we all float in together through life encompasses and weaves its way through every family member’s life, making our bond tighter and more stressful all at varying times.

Take a recent episode at our house. I received a call that my child who was at his school an hour away had a case of suspected pink eye. With my husband unable to leave work, my other child at home and I not able to drive, the duty of picking up the child at school fell to my daughter, who had to leave work two hours away. Thus a simple case of pink eye sent reverberations throughout our disability spider web, affecting everyone.

Many of our current laws have yet to reflect and support this self-made web we have created which allows each of us to live our separate lives collectively. The Family and Medical Leave Act is the perfect example. The civilian version of the bill allows a caregiver guaranteed unpaid time off to care for a parent, child or spouse without the worry of losing their job as a result. The military version of this bill, however, has added four magical words that make all the difference to a family like mine — “or next of kin.”

That may not seem like such a big difference at first — until you consider factors such the large number of children on the autism spectrum who will soon become adults. Autism is a spectrum; I know as I have children all over that spectrum. Some of these adults will be able to live independently, while others may need supports. For this last group, government services and funding are often limited as they may not fit neatly into any disability category. Many remain living at home with their parents while their siblings build lives in the larger world.

As society discusses the concerns about this growing group of adults, there is a caregiver aspect to this planning it seems no one has begun to address yet — sibling caregivers. Eventually the parents are going to pass away. When that happens, the autistic adult who needs supports may still face a severe lack of services and funding. Hopefully they will have a sibling to step in and help out.

However, without those four magic words, “or next of kin,” a sibling caregiver is not given the most basic of guarantees. If the sibling is lucky, as in my daughter’s situation, the employer is understanding. But there is no legal job protection if they need time off to meet their caregiving responsibilities. Let’s also not forgot those nieces, nephews, half- and step- siblings, as well as a myriad of other family members who step up when no one else can. These four words would give them protections as well.

I have a petition at to add “or next of kin” to the Family and Medical Leave Act, so our families and thousands of others like them will be able to access the caregiving supports they have developed. Caregivers deserve to be able to balance their family and work responsibilities, knowing that any time someone they love might need to do the same for them.

Please sign my Family and Medical Leave Act Petition.

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Thinkstock photo by Kuzmich Studio.

Originally published: May 2, 2017
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