A few months ago I wrote a letter to President Biden to discuss the challenges of remaining employed while disabled.
Below is the original letter:
Dear President Biden,
I am writing this to share with you an insurmountable challenge facing the disabled community that denies us basic rights and freedoms. The Income and Asset Limits of the Medicaid, and related programs, put individuals requiring daily cares in the impossible position of having to choose between work or the cares required for daily living.
Medicaid is the only program that will presently cover daily home health cares required for daily life. Other programs (like Medicare) only cover nursing or medical cares, and not the basic needs of feeding, bathing, dressing. But joining the workforce jeopardizes the meager income and asset allowances of the program. As these limits only count “Gross Income” it becomes impossible for many to work full time, without having to risk sacrificing their “essential daily cares”.
Yet, through working, many (including myself) find a sense of fulfillment and community, while being able to take some of the financial burden off of State and Federal funds. Through our employment we are able to pay our own rent/mortgage, buy our own food, and often have private insurance cover some of the standard medical care that the State and Medicaid would otherwise have to take on.
Though some other Medicaid eligibility programs exist, such as the Home and Community Based Services (HCBCS Waiver), the co-pay and extremely low asset limits make this an impossible option as well. At the time of this letter, the calculated co-pay I would have upon switching to the HCBCS Waiver would be $5000 per month (more than my take-home pay after tax, without any other deductions).
Furthermore, as these limits are calculated per household, many families are put in the impossible situation of having to choose between cares and the ability to get married. Thus, many individuals with disabilities are effectively “forbidden” from getting married, as the Medicaid income and asset limits are so strict that individuals cannot remain eligible on a single, full-time, income let alone two incomes.
Having a spouse or life partner is not just a basic human right, but often helps fill in some of the care gaps that would normally fall on the tax payers. There are many days where my partner has helped with basic cares like getting food, water, and basic toileting, all of which would otherwise fall entirely on Medicaid’s shoulders.
Some suggestions I have would be to pursue provisions guaranteeing home health care, for basic daily needs, regardless of income, co-pays calculated based off a more reasonable metric (e.g. net income – cost of living and utilities – a savings metric to save up for future monthly and life expenses), and automatically exempt accounts for qualifying expenses and future planning.
In fact, prior to changes made at the Federal level in 2017, effectively removing my ability to save up income, I was able to set aside monies from my paycheck toward saving up for a accessible house and an accessible vehicle (expenses which normally would fall to State resources such as the Department of Vocational Rehabilitation). This freedom, helped me find greater independence, while working a job I love and living in the wonderful community of Madison, Wisconsin with my life-partner.
As these limits are applied nationwide, individuals with disabilities in every State, face this challenge. Numerous articles demonstrating this have appeared in USA Today, Vox, and many other news sources. Furthermore, I see daily posts of the crushing debt, inability to hold a job for fear of losing vital cares, and inability to marry the person we love that plague the disabled community due to these arbitrary and ridiculous restrictions.
Please make changes to allow individuals with disabilities to hold jobs, to get married, to have a family without having to fear losing the basic cares we need to stay alive.
Yours truly,
Joseph Frost
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