Mirror of Justice

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Monday, January 13, 2014

Impact of the Dying of "the Greatest Generation" on Disability Care

Like Cecelia (welcome!), I only recently had the chance to read through Evangelii Gaudium, and like her, I found it to be a 'treasure trove for reflection.'  I must confess, though, to finding myself a tiny bit disappointed by the lack of mention of people with disabilities among Pope Francis's listing of the most vulnerable.  It's clear from his actions in reaching out to people with disabilities in so many ways that they are among the populations to which he feels a special commitment, so the lack of mention of them in the Exhortation was something I noticed.

So today, I was delighted to see this report in Zenit of Pope Francis' private audience with Ileana Argentin, a member of the Italian parliament who is disabled and active in disability issues.  The main topic of the meeting was an issue that I've recently become aware of as an emerging issue in the U.S. as well, "the importance of supporting the parents of seriously disabled people, who experience great anxiety about what may happen to their children after their own deaths, and the difficulties their siblings may encounter in assuming the responsibility of care."

In recent conversations with disability organizations in different parts of the country, I am noting a growing concern about our ability to care for the disabled children of the "Greatest Generation."  (This is also an issue I'm facing personally from two directions, as my disabled son turned 18 and we think about his future, at the same time that my siblings and I are confronting the future care of our own brother with disabilities, still living at home with our aging mother.)    Among the battles the Greatest Generation fought were the ones fought by brave and caring parents to keep their children with disabilities from being institutionalized, to get them into public schools, and to get jobs and other sorts of community support for their kids.  But many of these parents did this work privately, without involving the (then-nonexistent) state support mechanisms.  Many of these children did not move into group homes, and all of these children are now themselves adults, still living at home with aging parents who are dying or increasingly unable to care for themselves.  Transitioning into any kind of a group care situation is difficult under any circumstances, but the difficulty is magnified when the transition is taking place in the midst of mourning the death of a parent.  I heard one story of a disabled adult living at home whose mother died; it only came to the attention of the 'authorities' when members of their local church noticed they had stopped attending Mass. 

I'm grateful to Pope Francis for bringing some attention to this emerging crisis in the care of some of the most vulnerable.

 

 

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Schiltz, Elizabeth | Permalink