Work requirements have been raised in the past and are surfacing again in the context of Medicaid reform. In my nearly two decades of work with people with disabilities and their families, I have met few people with disabilities who do not want to work. Instead, I have met many people with disabilities who are concerned that working “too much,” will undermine their eligibility for the very support and services they need to work and live independently in the first place.
The government definitions of “having a disability” are deficit-based. That is, they require a person to provide evidence of all the things they cannot do. At the same time, obtaining and maintaining employment requires a person with a disability to provide ongoing evidence to an employer of all the things they can do. It does not take an expert to see how these two requirements are fundamentally at odds. Let’s look at some examples of the deficit requirements built into the definitions and processes that various government agencies use to determine eligibility.
The Social Security Administration’s (SSA’s) definition requires a person over 18 to have “A medically determinable physical or mental impairment (or combination of impairments) that prevents him or her from doing any substantial gainful activity and has lasted or is expected to last more than a year or end in death”. Substantial Gainful Activity is defined for 2025 as the ability to earn more than $1,620 per month in gross wages. In my home county of Cook, Illinois, the minimum wage is $15/hour. This means that anyone who works more than 25 hours per week at a minimum wage job works “too much” and fails to meet the definition of “disabled”. This is a huge risk, because people with disabilities, particularly intellectual and developmental disabilities, are more likely to work in low-skill, hourly wage jobs with highly variable hours and a high probability of being laid off in economic slowdowns.
Moreover, people who continue to meet the SSA definition of “having a disability” continually from before the age of 22 are potentially eligible to receive a “Childhood Disability Benefit” or “CDB,” also known as a “Disabled Adult Child” (“DAC”) benefit. This benefit is based on their parents’ work records. Depending on the parents’ level of employment, this benefit may be of a size to contribute significantly towards the person’s support as her/his parents age and eventually die.
Illinois State Employee Retirement System (SERS), State University Retirement System (SURS), Teachers Retirement System of Illinois (TRS), and similar pension programs permit a retiree to leave a survivor’s benefit to her/his adult child with a disability. To qualify, the adult child is required to continue to meet the Social Security Administration’s definition of “having a disability” as stated above. Additionally, adult children with a disability may need to demonstrate “dependency” as described below. As with the CDB/DAC benefit described above, this survivor’s benefit may contribute significantly to the support of the person with a disability once the parent has died.
The Internal Revenue Service’s (IRS’) considers a person to “have a disability” when “[S/he] can’t perform significant duties over a reasonable period of time while working for pay or profit in a competitive work situation for at least the minimum wage because of a physical or mental condition”, with the added provision that the condition must be expected to last at least a year or end in death. People, who fail to meet this definition, will not be able to claim Impairment Related Work Expenses (IRWE) or the credit for the elderly or disabled. Failure to meet this definition also limits workers’ ability to access their retirement funds either to cover unexpected medical bills or to move them to an ABLE account or a Supplemental (Special) Needs Trust to maintain eligibility for Medicaid-funded services. Parents, who act as caregivers/support workers for their adult children with disabilities, would be precluded from claiming them as dependents.
The Illinois Department of Human Services Developmental Disabilities Division (DHS/DD) requires that a person have either a measured IQ of 70 or below or “significant” limitation in three out of these six life-skill areas: self-care, language, learning, mobility, self-direction, and capacity for independent living in order to access residential, employment, and other support services. People, who do not meet the IQ requirement, may face challenges demonstrating that meet the “3 out of 6” requirement, which is subjective, if they work at a anything close to a self-supporting level. Ironically, those residential and employment supports may be the very services that allow the person with an intellectual or developmental disability to obtain and maintain employment in the first place.
The Illinois Department of Human Services Division of Rehabilitation Services (DRS) uses a “Determination of Need” or “DON” assessment tool to determine eligibility for its Home Services Program that provides caregiver/support worker hours to people with disabilities other than intellectual and developmental. The tool measures the persons inability to engage in basic tasks of daily living including eating, bathing, grooming, dressing, transferring, incontinence, preparing meals, being alone, telephoning, managing money, managing routine health tasks, managing special health tasks, being outside the home, doing laundry, and doing housework. While the scoring is numerical, it is also subjective.
Medicaid itself. In order to access DHS/DD services for people with intellectual and developmental disabilities or to access DRS services for people with disabilities, a person must be Medicaid-eligible in addition to meeting the divisional definitions discussed above. Currently, adults with disabilities may be eligible for Illinois Medicaid under the following categories:
· Affordable Care Act (ACA) coverage for low-income adults. This category has an income limit (earned and unearned combined) of 138% of the Federal Poverty Level, which amounts to $1,799.75/month for 2025.
· Aid to the Aged, Blind, Disabled (AABD) coverage. This category has an income limit of 100% of the FPL or $1,304.16/month.
· Special Groups of Former SSI recipients. This category has variable income limits but requires that the person had formerly been eligible for SSI and Medicaid concurrently, which would have required them to meet one of the above two categories in their past.
· Health Benefits for Workers with Disabilities (HBWD). While this category has a significantly higher income limit than all the others, it also requires the person to pay a premium for Medicaid that increases as the person’s income increases. In addition, the person must be adjudicated as “disabled” by the Social Security Administration.
As noted, many people with disabilities require personal care/support worker services in order to maintain competitive, integrated employment, and those services required continuing Medicaid eligibility.
Chicago Transit Authority (CTA), Regional Transit Authority (RTA, including the PACE bus system) allows people with disabilities to ride on a reduced fare and/or use the paratransit door-to-door services. Riders must either demonstrate that they are receiving Social Security Disability benefits or Veterans disability benefits or provide documentation of disability and limitations from a medical provider. Even if a medical provider will substantiate the disabling conditions, it may be difficult for a rider to retain eligibility if they lose Social Security disability benefits.
Deficit-based eligibility requirements create a substantial barrier to employment for people with disabilities. Any proposal to add work requirements to Medicaid must take this reality into account. People with disabilities generally want to work. Frequently, they must maintain access to personal attendant care, transportation and other services in order to work. Sometimes, because their employment is less reliable or less lucrative, or because they anticipate having to retire at an earlier age, they need to retain eligibility for future disability cash or health care benefits. Amending eligibility requirements to take into account both the capabilities and support needs will improve the employment outcomes for workers with disabilities.
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