Caregiver's Golden Years, Between a Rock and a Hard Place
Nov 05, 2017 03:34PM
By Greg Jerrett
Social Security came into being with the Social Security Act of 1935. Thirty years later, the federal safety net further expanded with the creation of Medicare and Medicaid during the presidency of Lyndon Johnson.
The system evolved to assist not only the elderly (with Medicare focusing on citizens aged 65 and older), but also the disabled and impoverished of all ages (with Medicaid), to become as self-sustaining and independent as possible.
Fast forward to the 21st century. Ever since 2010, President Barak Obama’s Affordable Care Act (aka “Obamacare”) dramatically widened the nation’s social safety net. In the first year of Donald Trump’s presidency, Republican efforts to undo and repeal the Affordable Care Act sparked concerns that 22 million Americans (according to the Congressional Budget Office) would lose their access to affordable health insurance.
With Republican control of the White House, House of Representatives, and Senate, the federal safety net seemed all but certain to shrink.
The Congressional Budget Office—tasked with determining how much any given piece of legislation will cost (or save) to implement, including reductions in tax revenue—concluded in a March 13 report that the American Health Care Act of 2017, popularly known as “Trumpcare,” would: “reduce federal deficits by $337 billion over the 2017-2026 period” with the largest savings coming “from reductions in outlays for Medicaid” and from elimination of Affordable Care Act “subsidies for non-group health insurance.”
While much of the 2017 health care debates have focused on repealing Obamacare, 74-year-old Marge Koley (of Bellevue) exists at the crux of Medicaid and Medicare. Koley is one of the many senior caregivers who attend to younger, disabled relatives.
She and her husband rely on the earned benefits of Social Security and Medicare, benefits that have made it possible for them to enjoy their golden years without working.
Watching the media spectacle unfold, Koley was most afraid for their 37-year-old daughter, Jenny, who has Down syndrome. Jenny qualifies for Social Security Disability Insurance, Medicare and Medicaid for health insurance, and receives support services to live and work independently through Medicaid and Nebraska Health and Human Services.
“Jenny has always had the dream of having her own apartment and living as independently as possible,” Koley says, speaking with Omaha Magazine in July on the eve of the so-called “skinny repeal,” the last ditch effort to repeal Obamacare by the Senate.
“What will happen to Jenny after I am not here to care for her?” she says. “That is my greatest fear. She has one sibling in Indiana. If the proposed caps and cuts in Medicaid are enacted, she could lose the services she needs to live and be part of the community. Also lost are the years of progress allowing people with disabilities to decide for themselves where they want to live and with whom. We may have for-profit insurance companies running programs and deciding the fate of our children. Will institutional living return? Will the waitlists continue to grow and grow?”
Jenny moved into her own place in September 2016; meanwhile, Koley still provides most of her transportation needs. Medicaid service providers take care of residential support and job coaching.
“Jenny currently works nine hours a week at the Ollie Webb Center,” Koley says, obviously proud of what her daughter has been able to accomplish with some compassionate assistance. “Jenny loves being responsible for herself, and now cleans her apartment and does her wash on her own without prompting, and has been able to decrease her outside support. Now, she has someone one day a week to help work on cooking, going out into the community.”
The current political environment is a source of anxiety for Koley, who says she has never before seen the American public so polarized.
“This is the most divisive political climate I have ever experienced. Neither side will listen to the other’s views,” Koley says, adding that if she had a chance to talk to lawmakers, her message for them is to save Medicaid. “I want them to save Medicaid and to get a full understanding of the consequences of their actions. Budgets should not be balanced on the backs of people with disabilities who are least able to defend themselves.”
Efforts to repeal the Affordable Care Act—for the time being—came to a screeching halt with the pivotal thumbs-down vote from Republican Sen. John McCain of Arizona, who flew to Washington D.C. for the vote shortly after being diagnosed with an aggressive form of brain cancer.
Months after the failure of the “skinny repeal,” in the week following the failure of another repeal attempt (the Graham-Cassidy Bill), Koley experienced a sense of temporary relief.
“I’m very happy that it did fail, knowing how it would affect Jenny,” she says. “But I know politicians will be revisiting this, and we’ll need to gear up again to defend Medicaid benefits at a later time.”
Visit olliewebbinc.org to learn more about the Medicaid service provider that plays a crucial role in the lives of Marge and Jenny Koley.
This article was printed in the November/December 2017 issue of Omaha Magazine.