I have never met a parent who did not hope to predecease their children. A gentle decline and death at a ripe old age is the natural end of a life well lived. Like everything else, this natural progression takes on a different meaning in the context of disability.
Everyone, whether or not they have a recognized disability, begins life in the care of his or her parents. For some, that care ends very early. For others, especially those with disabilities, it often persists. I am 32. My parents are 65. 16 years after moving out on my own, my parents still play an ever dwindling role in my support system. It is small enough that, though I pray to God that they live many more decades, my lifestyle would not be significantly impacted should they pass.
This was by conscious design on both of our parts. Before I reached the double-digits, I spent time at summer camp with hired care. In high school, as my size and ever more complicated schedule made it more and more difficult for my mother to provide substantially all of my day-to-day care, we were hiring what limited help we could afford, and I was learning to direct them.
When I departed for college, and had access to steady state funding for personal care for the first time, we hired professionals and never looked back. Sure, there were years of lessons to be learned in proper hiring and supervision. Sure, especially in college, my mother was 90 minutes away in an emergency. Sure, to this day, were I in serious need, she would be on the highway, were she not beat to the punch by my sister, brother, or law school best friend, all of whom live closer.
Still, my parents and I understood at an early age that my care needed to be professionalized, that no one or two people, no matter how loving, could be the foundation of my support, not only because they had lives to lead and jobs to do, but because, by the Grace of God, I should live many years beyond them, and certainly beyond the now bygone days when they could be physically responsible for a substantial portion of my care. I lost a little TLC in professionalized care, but I have gained the ability to always see to my own needs.
I was troubled, therefore, when I read this article about parents caring for their 16-year-old son. The article describes two incredibly devoted parents caring for their son with a disability.
In the article, the parents freely acknowledge that they worry about who will care for their son when they are gone. They question whether he will be able to advocate for himself, and they pray for the strength to keep on giving. This is touching, and upon first read I was overcome with affection for this family.
Yet, upon reflection, this concerned me. We learn from the article that the State pays for at least some of the young man’s care, and that this money is paid to the mother.
Now, don’t get me wrong. I fully support the structure of State programs that allow family members that provide care to be compensated for the opportunity cost of the ability to work outside the home. In the life cycles of families, this can be critical.
That said, were I counseling this family, I would suggest they take some of these funds and begin to figure out to what degree this young man can self direct professional care, train him to the utmost of his abilities, and find strategies to compensate for those things he can’t do. Like my family, I would love to see them develop a model that works while the parents are still fully able to provide the care during the growing pains.
As these parents prepare for their golden years, let them live their own natural physical changes secure that the well-being of their son is not dependent on the strength of their backs. When they reach the end of their journeys, let their son be able to celebrate their lives and process his loss without needing to simultaneously worry about whether his basic needs will be met.
Every parent knows that one day they will be no longer able to care for their children. Many children can become self-sufficient, some will always need external help. Either way, critical part of raising a child with a disability is to figure out strategies to ultimately write yourself out of the support system.
In cases like mine, and the parents in the story, where the individual receives state resources, it’s about finding ways to use those resources so that any one person is not indispensable. For those who have no means for anything other than family care, the obligation falls upon society. We owe it to these families to give them the resources to see that as their children grow up into adults, they are provided with ways that their needs will be met even once their parents can no longer provide.
The parents in the story are right to worry, and it certainly never hurts to pray, but I strongly recommend that everyone take action on those worries while there is still something that can be done.