It is irrelevant whether a person is homeless. Homelessness doesn’t equal disability.
It is irrelevant whether a person is forty-something and living with elderly parents who are on a fixed-income and struggling to make ends meet themselves. It is irrelevant that the elderly parents’ limited resources are redirected to their disabled adult-child’s medications, doctors’ visits, hospitalizations, food, transportation, etc. The fact that the elderly parents’ financial security is gravely compromised is not a factor in Social Security’s inquiry.
It is irrelevant whether a disabled young adult, without health insurance, is hospitalized such that the family’s financial resources are so stretched the family cannot afford to send their healthy children to college. Other kids’ compromised opportunities are definitely not a factor in a disability case.
All of that is irrelevant.
The family is the first and most important safety net in society. Families are expected to bear up under the weight of caring for their most vulnerable members – the babies, and children, the elderly, sick and disabled. And families do bear up under that weight. Families take care of their own.
Parents stay home with babies and children, lose sleep, willingly shell out thousands of dollars for childcare, nannies, sideline careers, worry, spend substantially more on housing in good school districts, or pay for private schools, tutor, coach, worry, freeze half to death at soccer games, check homework, counsel, serve in Parent-Teacher Organizations, bake for bake sales, worry, drive carpools, et cetera.
Families of every stripe drop everything when their elderly family members’ inevitable illnesses hit. Family is there. We visit, transport, grocery shop, cook, clean, launder, sort medications into pill boxes, bathe, cut toenails, diaper, feed, move to be closer to them, move them in with us, we listen and worry and fuss and sometimes fume. Eventually we mourn.
My sister Linda, a skilled nurse, has reorganized her life for months on end to be there for family members when we have needed her care. It’s amazing and beautiful and so so so … appreciated.
Families buck up spectacularly.
The familial safety net is not without its breaking point.
The AARP Public Policy Institute published Valuing the Invaluable: 2011 Update where they quantified the monetary value of family caregivers providing care for adults during 2009 at 450 billion dollars. (This figure does not include care provided to children under age eighteen.)
The study determined that those who take on the unpaid role of caregiver put themselves at sizeable risk of emotional and physical stresses, and serious financial hardship.
The report articulated that:
A key theme to emerge from systematic reviews of family caregiving studies over the past 30 years is that family care can have negative effects on the caregivers’ own financial situation, retirement security, physical and emotional health, social networks, careers, and ability to keep their loved one at home. The impact is particularly severe for caregivers of individuals who have chronic health conditions and both functional and cognitive impairments.
“I just called to tell you Vicky tried to kill herself again this weekend. She’s in the hospital. Call me when you get a chance.” The woman’s voice in my voicemail is one well-known to me. There is no need for her to say her name, or my client’s last name. We both know this drill. She and her husband are in their mid-seventies, and have several children, one of whom is very, very mentally ill.
For my purposes, all I really need to know is which hospital they’ve gone to so I can request the records. They always go to the same hospital. I guess I could just not call her back. I call because I know she needs an ear.
When we talk, she tells me she and her husband volunteered at an event at their church for a few hours, and returned home to find their daughter unconscious and bleeding. “We just can not leave her alone anymore.” Her anger and exasperation are plain.
For these parents there is no end in sight, no end to the intensive, daily care their middle-aged daughter needs. As the AARP study had said, the negative impacts on caregivers “is particularly severe for caregivers of individuals who have chronic health conditions and both functional and cognitive impairments.” And that is this family’s reality.
One irony is that some Administrative Law Judges will look upon this and determine that the primary reason the adult child is being cared for so intensely is that the parents crave and encourage their child’s dependence. A judge once told me, “all that kid needs is a good, swift kick right out the door.”
Several years before, Vicky had moved out. She got and was fired from several jobs, could not manage caring for an apartment, fought violently with her roommate and a neighbor, and eventually wound up homeless with numerous run-ins with police. She could not be trusted to manage her medications and symptoms of her illness on her own. She wasn’t safe. Society wasn’t safe. Not seeing any other solutions, her parents brought her back home.
“Can we tell the judge how hard this is? Can we tell the judge we’re going broke? Can we talk about how much we worry about what is going to happen to her when we’re gone?”
I try to listen, to express my understanding and concern about their plight … but the caregivers’ circumstances are not a factor in the disability determination process.
The familial safety net is not without its breaking point. And that is relevant.