This article is provided by SNA member Victoria Blair Struse of Fletcher Struse Fickbohm & Wagner PLC in Tucson, Arizona. The firm specializes in estate and trust planning and administration, guardianship and conservatorship.

My brother is autistic and is in his 50s. He wasn’t formally diagnosed until about ten years ago, for many reasons, but primarily because autism wasn’t well understood years ago. His teachers would label him as “slow” and “awkward,” suggesting that he just needed more discipline. He endured bullying for being different. Despite being exceptionally book smart — often earning the highest grades and eventually obtaining a master’s degree — he struggled tremendously in work environments.

In the workplace, my brother would become overwhelmed and confused, unable to independently follow tasks. He often got in trouble for having no filter. The pattern was heartbreakingly consistent: each time he found a new job; he would be fired within a few months for one reason or another. After so many terminations, finding new employment became impossible.

Like many people with disabilities, he has never officially been determined “disabled” by the Social Security Administration. His school records are long gone, and medical records are scarce because he rarely went to the doctor.

Today, he relies on Medicaid for his healthcare coverage. As states consider implementing work requirements for Medicaid recipients, his situation highlights why these potential changes matter for thousands of families. Understanding what’s being proposed, who might be exempt, and what documentation could be required will be crucial — especially for people who, like my brother, don’t have an official disability determination. Here’s what families need to know about these potential requirements and their potential impact.

Understanding Current Medicaid Work Requirements

The landscape of Medicaid coverage is shifting. Previously, the Center for Medicaid and Medicare Services approved 13 state work requirement proposals, though most weren’t implemented due to legal challenges and the COVID-19 pandemic. As states face potential funding adjustments, they are likely to reconsider these requirements as a way to manage their Medicaid programs.

Work requirement proposals have included:

  • A minimum of 20 hours per week or 80 hours per month of work for beneficiaries aged 18-64
  • Varying exemption policies for certain groups, such as people with disabilities, caregivers, and parents of young children
  • Different standards for proving disability or exemption status

I’ve looked closely at these proposals because of my brother’s situation. Many of them exempted people based on the Social Security Administration’s determination of disability. Others required proof of temporary or long-term disability benefits. Some of the proposals provided for an exemption if the person’s treating physician wrote a letter to state that the person was unable to work.

Many of these requirements would leave my brother, and many others like him, vulnerable.

The Reality of Medicaid Recipients

It’s important to understand that most Medicaid recipients are already productive members of their communities. A 2023 survey revealed that 71% of working-age adults on Medicaid are either working (full or part-time) or in school. Another 12% are caregivers for others. But these statistics don’t capture people like my brother, who want to work but face invisible barriers.

Critical Challenges for People with Disabilities

Through my brother’s experience, I’ve seen firsthand how the system can fail those who don’t fit neatly into bureaucratic categories. Several significant issues exist:

  1. Documentation Barriers: Many people lack the extensive documentation required for an official disability determination, especially if their condition wasn’t well understood or documented in their youth.
  2. Qualification Gaps: Some individuals don’t qualify for SSA disability determination because they lack sufficient work quarters or don’t meet financial criteria for Supplemental Security Income.
  3. Medical Verification: While some states may accept physician letters verifying inability to work, many healthcare providers aren’t typically equipped to evaluate patients for work capability.
  4. Limited Alternatives: Without SSA disability determination, Medicare isn’t available. While the Affordable Care Act plans exist, they often aren’t feasible for people needing extensive medical care, given their high monthly premiums.

Why This Matters to All of Us

This is a critical time for the Medicaid system, as potential funding changes could affect millions of people’s access to necessary medical care. With states potentially facing difficult decisions about program management, the stakes are incredibly high for families like mine.

I share my brother’s story because I know there are many others facing similar challenges — people who don’t fit neatly into the system’s categories but desperately need healthcare coverage. If you’re concerned about maintaining healthcare benefits for those in need, it’s wise to prepare in advance — and consider contacting your local congressional representatives to voice your concerns.

Need help understanding how these changes might affect your family? Contact a Special Needs Alliance attorney in your area.

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