The Cancer Patient and the Caregiver
The story of two women
Through the stories of these two women, I will be showing the potential effects of the coming Medicaid cuts. Regardless of how you feel, in general, about Medicaid, please take just a few minutes to read this. It’s not that long.
Politicians who are promoting work requirements for Medicaid insist that disabled people won’t be included in those requirements. But as I have been saying for weeks now, in practice, many disabled people will be harmed.
Here is one woman’s story.
The Cancer Patient
WITN News told the story of Ashunti Osei-Copling and her struggle to get approved for disability.
She was an insurance agent, a single mother of two, who owned a home and her own business. The article says that she "was at the top of her field, motivating crowds at industry events [and] winning awards."
Then she was diagnosed with stage IV multiple myeloma, a type of cancer.
Before this diagnosis, Osei-Copling never imagined she would need help to support herself and her family. She says, "I didn't ever see myself needing SSDI before retirement."
Her illness was dramatic and unexpected. She says, "You can pretty much imagine going from owning your home and owning your own business to just everything stopping one day immediately."
Her condition became life-threatening, and at one point, she went into hospice. However, she survived and was removed. She endured countless trips to the hospital.
Debilitating symptoms made her unable to work, yet she couldn’t get approved for disability. She participated in many multiple myeloma chat groups, where cancer patients often discuss their struggle to get government disability assistance.
Osei-Copling said:
There are people that get denied that have gone through transplants that still have the disease, that are in stage 4 that are on hospice, and they still get denied because they may have missed questions on their paperwork, or they did not submit everything in a timely manner.
During the time someone spends going through the appeal process, even if they have terminal cancer, they’re not classified as disabled, meaning they’re not exempt from work requirements to get social services. They may be bedridden and in hospice, and still not considered disabled.
Thus, under the budget that may soon pass, a person with cancer in hospice may still be required to work to afford treatment.
T.J. Geist, the Director of Claims for a firm that represents people seeking disability, says:
It's a complex program. It takes a while to gather the information that is needed and to gather information from treating doctors as well…That's a big reason why many people are denied at the initial level.
He compares getting disability to filing taxes and says, "You use a software, or you use a representative to help you with that. Same goes for Social Security Disability."
But there is no software, and many people who are already too disabled to work (and have no income) cannot afford to hire a lawyer. Lawyers are very expensive.
The ill, disabled person needs to navigate this huge, complex process while they are very sick and unable to work a job.
It’s a process that would be very difficult for a healthy person to figure out. For a person struggling with debilitating symptoms of physical and/or mental illness, it can be impossible.
At the time the article was written, Osei-Copling still didn’t have government-recognized disability, even though she had been trying to get it for well over a year. She was still battling cancer.
Under new Medicaid rules, she would be required to work. So would the other cancer patients in hospice.
The Caregiver
I have a friend who is a full-time caregiver for her adult son with schizophrenia and her husband. I’ll call her Anna.
Anna’s husband (I’ll call him Dave) had severe degenerative arthritis in his back and, despite very severe chronic pain, was denied pain medication. For years, he coped with the pain as best he could and worked full time. But then, he suffered a massive head injury on the job.
He was approved for workers’ compensation.
Anna’s son has the intellectual ability of a child and needs near-constant supervision. Dave has serious cognitive problems. Neither Dave nor their son can manage their medications or remember to take them. Neither can drive or prepare meals.
Anna also cares for her granddaughter while her daughter works. This spares her daughter and her son-in-law the extremely high costs of childcare, which would be difficult for them.
Anna would love to go back to work. She says it would be “a dream come true.” She misses having a job and a career. But her disabled relatives need her.
Under work requirements, Anna will lose Medicaid unless she goes to work and leaves her husband and son to fend for themselves. She would either have to sacrifice having any medical care or leave them helpless. The only option would be to institutionalize them despite the wretched conditions in many nursing homes and mental hospitals.
If she could even find one covered by their insurance—her son has Medicaid, the very program being cut.
So, in addition to taking away health insurance from many people with disabilities, hundreds of thousands of disabled people could lose their caregivers (and this goes for elderly people, too).
I called Anna yesterday to get permission to tell her story. She said yes. She also told me that her elderly mother just had a catastrophic stroke.
It isn’t too late to stop this budget and spare disabled people this nightmare. Please call your senators at (202) 224-3121. You will be transferred to your senator. Call both of them, if you can.
All you have to say is, “I oppose cuts to Medicaid and other services that help the poor and disabled, such as SNAP and housing vouchers. pease eliminate these cuts, which will harm vulnerable people. Do not pass this budget with those cuts.”
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