A mounting crisis is occurring for the disabled and elderly. Lack of access to daily cares is forcing many seniors and individuals with disabilities to go without access to food, medical appointments, employment, and social activities.
In a letter to the from Access to Independence to the City of Madison Disability Rights Commission, Access to Independence shares that the Survival Coalition of Wisconsin Disability Organizations has noted impacts on the disabled and elderly communities, including:
• 38% missing or leaving employment, due to limited care staff.
• 26% missed meals.
• 17% being confined to bed all day.
• 22% changes in housing (including being forced to move to long-term care facilities.
Even in my own life, I’ve weekly had to skip meals, drastically shift my daily timeframes (getting up as early as 4:30/5 AM three days a week, and into bed as early as 7 PM), and wait two to three hours to use the bathroom.
Since 2020, I’ve lost 60% of my care staff, and the remaining three caregivers have had to take on my 40+ hours of weekly cares (meals, bathroom assistance, etc.).
Most weekends, I am forced to go without help for my dinner and bed shifts, to accommodate other clients who do not have “Natural Supports” (family/spouses/household members). If it weren’t for the support of my wife, I’d be risking bed sores, respiratory complications, and malnutrition, on top of the mental health challenges of social isolation. Yet some have come forward with firsthand accounts of being forced into hospitals and long-term care homes due to caregiver scarcity.
Due to this crisis, members of the public, and some City Alders, have been approaching the City of Madison’s Disability Rights Commission requesting options to lobby the State and Federal government for additional support, while putting together supportive incentives (including bus passes, tax rebates/credits, etc.).
However, there is only so much the City of Madison, local municipalities, and County government can do. As caregivers are paid by Federal Medicaid dollars, and paid at reimbursement rates set by the State and Federal government, caregivers are presently paid as little as $14-16 per hour (Cap Times – As demand rises, wages for Wisconsin home care workers stagnate). This wage is further pro-rated per increments of 5 minutes, per the Federal Electronic Visit Verification requirements (EVV), further decreasing equitable wages for caregivers.
While rendering necessary daily cares, caregiving staff are docked for late arrivals, and are required to drive house to house, only being reimbursed for gas. Caregivers often have to drive 30 minutes unpaid at the start and end of each block of cares, work for one to two hours, drive 30 minutes (with just gas reimbursement), and repeat. This can hit hard when shifts have a span of time between them, forcing caregivers to once again drive unpaid for their time.
To make matters worse, caregivers are not granted vacation nor benefits, as agencies and programs (including State run programs) restrict caregivers from working full-time, to side-step having to pay leave and benefits. Due to the lack of benefits and leave, many have left in droves, just to get coverage for their families.
These penny-wise/pound-foolish approaches to medical cost reduction put further strain on State and Federal funds, with many caregivers, of necessity, having to enroll in Medicaid themselves, and sometimes Food Stamps, while keeping earnings within public assistance limits.
In addition to caregiving challenges, the Clients often face loss of employment and home, without access to home healthcare. These challenges further add to the financial strain, on State and Federal resources, as those Clients that had only required funds for cares, must now tap into additional public assistance, and/or move to expensive long-term care options (covered entirely by Medicaid funds).
With Nursing homes costing an average of $94,00, for a shared room, annually (MedicaidPlanningAssistance.org), States and the Federal government are having to take on the additional financial load, for many cases that could just as easily, and with greater Client satisfaction, have stayed in home.
Please join me in asking our elected officials to help everyone have access to the cares we need to live, and remain as self-supporting and independent as we can be.
Folks in Madison,
The Disability Rights Commission would love your input, on how to improve equitable options for supporting caregivers.
disabilityrights@cityofmadison.com
Thank You
Joe Frost
Commissioner
City of Madison – Disability Rights Commission
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