When I decided to launch Being Patient, an editorially independent news site covering Alzheimer’s disease, one of my goals was to elevate the patient’s (or caregiver’s) perspective on the disease into the conversation on health. I was surprised to find the topic so many people wrote to me about was the agonizing experience they had navigating the U.S. health care system.
That was under Obamacare. Could Trumpcare be worse? The answer is yes, if you are looking at it from the perspective of an Alzheimer’s patient.
I would urge the GOP senators to listen to people like Susan Ellis. Susan’s husband was diagnosed with early onset Alzheimer’s disease at 55 years old. Doctors told him he was in the mild stage of the disease in spring of 2016 but the progression was so fast that a year later he was entering a more severe stage where he could no longer reason or eat without choking. Susan had to quit her job and assume the role as full time caregiver to her husband. Already facing a dramatic life change and the loss of income, Susan describes her arduous and frustrating journey to obtain Medicaid as “the longest most painful experience I did not need at all.”
Susan was told she made too much money to qualify for Medicaid, despite having to quit her job to look after her husband. She then wrote to her state representatives but says she was getting nowhere fast. After numerous appeals, a Medicaid officer told her to “just put him in a home” because that is what the system is set up for. She was then told to take her husband’s IRA and spend it down so they could hit the low income requirement for Medicaid. By the fourth month and second appeal of trying to get benefits, a clerical error was made and Medicaid was mistakenly given to Susan, instead of her husband. Once she was finally granted benefits, Medicaid backdated the benefits so she lost out on five months of payments. Sadly just this month, Susan had no choice but to put her husband in a nursing home because she couldn’t keep up with the costs associated with home care or manage the care her husband needed.
To hear caregivers like Susan tell their story is heartbreaking. They are rightly angry at a system which forces them to spend wasted hours fighting for what is supposed to be rightfully theirs. Her story is not an isolated incident. There are others who have written to me about having to wait a year to apply for Medicaid because they are receiving Social Security disability. And others who complain a parent receives as little as 700 dollars a month in Social Security benefits and that deems them ‘too wealthy’ to qualify for Medicaid.
To say that an epidemic of dementia patients is coming is not an exaggeration. In the U.S. alone, there are over five million people with Alzheimer’s disease and over 15 million people providing their care. That number will triple within a generation. Currently, one in four seniors living with dementia is on Medicaid.
Alzheimer’s is a disease which mostly impacts the elderly. Many have Medicare and fill in the coverage gaps with Medicaid. The GOP Senate proposal would mean that even more people who want to stay at home, would be forced into homes. This is because home health care is optional and nursing home care is mandatory. Under the proposed cuts, the optional services would most likely be eliminated and with less money, the mandatory services are likely to get more expensive.
The Congressional Budget Office estimates that 22 million people will be uninsured in the next decade if the GOP passes the revised Better Care Reconciliation Act of 2017. In a system that is already failing so many in need of benefits, it’s hard to imagine life getting any harder for people like Susan Ellis.
