In 2021, I dedicated countless hours to expanding our reach into the community, scouting for resources, initiatives, and opportunities. Our goal was to promote Matt's success in the world at large—preparing him to re-enter the workforce and advocating for his tomorrow. I searched, stumbled upon, and chased tips from friends, colleagues, and agencies. It was laborious, frustrating, and an unbelievable time-sink. The cycle was relentless: track a lead, dial a number, navigate endless voice prompts, bounce from one representative to another, and repeat Matt’s story and needs over and over. Or worse, leave voice messages into a void and wait, wondering if I should have just recorded a standardized spiel.

I followed every single breadcrumb, even when a resource seemed far-fetched. If I had known better, I would have set more rigorous benchmarks than “help my son.”

My roster of agencies contained state and national entities: the Brain Injury Association (BIA), the New York Department of Health, the Office for the Aging, the Office for People with Developmental Disabilities (OPWDD), and AIM Services—the latter two of which partner with individuals with intellectual or developmental disabilities. Other sources, such as NY Connect and the Saratoga County Department of Social Services, supplied information on public benefits such as Medicaid, SSI (Supplemental Security Income), home care, accessible transit, adaptive equipment, and family support.

Southern Adirondack Independent Living (SAIL) assisted people with disabilities, older adults, and their families to live on their own. I found them to be a good sounding board and source of advice. Based on their recommendations, we looked into I-CAN (I Can Advocacy Network) and submitted an application for NYS TBI Waiver Services, although my clinical background told me Matt wouldn’t qualify.

In both instances, Matt was caught in the Medicaid Catch-22. Just as with so many other agencies—such as OPWDD, I-CAN, the TBI Waiver Program, and the NY Department of Health Services—that provided essential aid for daily life, transportation, and community access, they accepted only Medicaid recipients.

Because Matt was not on Medicaid, we were denied on every front. It felt like reverse discrimination: the almighty dollar held no clout, and self-pay opportunities were practically non-existent. A social worker with his health insurance suggested moving Matt’s hard-earned savings into an irrevocable trust, thereby spending down his assets to roughly fourteen thousand dollars to qualify for Medicaid. These funds would be permanently restricted to TBI-related needs—hog-tying his money so it couldn't be used freely for other considerations. It was a significant constraint, especially if he recovered enough to work, buy a home, or travel again.

Beyond the financial roadblocks, the search for safe, day-to-day living arrangements presented another maze entirely. For Matt, the  logistical hurdles of residing alone meant he needed some level of supervised housing and provision for basic needs, paired with user-friendly transit. The Center for Disability Services provided residential facilities alongside Without Walls, a program centered on community-based independence training; unfortunately, it lacked support for ADLs and medication management. Further south in Albany, the Center for Independence coordinated monitored housing. While both agencies furnished transit for their residents, Matt and others were excluded, and aid was largely restricted to medical appointments or approved group activities.

For individuals residing on their own, the Capital District Transportation Authority’s CDTA STAR bus was designed to serve qualified riders under the Americans with Disabilities Act (ADA) functional standards. Sadly, our nearest bus route had recently been canceled. The remaining alternatives were equally impractical: Wellness Express was restricted to adults 60 and older, while one private medical transit option cost a whopping $100 round-trip for a six-mile doctor's visit.

In a different vein, earlier in the year a church member had referred us to Jan, a career and life coach. During an initial 30-minute phone call, she generously talked with us about employment preparedness. She pointed us toward O*NET OnLine—a federal occupational database—should Matt choose to explore alternative job avenues and retool. We kicked this can down the road.

Next came the hurdle of employment. I consulted extensively with Unity House–North East Career Planning, which seemed ideal. Their mission is “empowering people with disabilities to break through barriers to employment.” This private-pay entity offered excellent person-centered solutions—from job education and re-entry preparation to career planning. We also explored ACCES-VR (Adult Career & Continuing Education Services-Vocational Rehabilitation), the NYS vocational rehab initiative. Right away, they asked Matt whether he was “ready, willing, and able to work now.” Thinking their purpose was to make him ready, he answered “no,” and they turned him down.

Several months later, our SAIL representative was quite surprised by the rejection and urged us to reapply immediately, emphasizing that we should say "yes" this time. Although his application was approved in July, the wheels of bureaucracy moved at a snail’s pace, delaying his initial interview by two more months. When the day finally came, Matt was on his absolute A-game. The first thing he proudly told his counselor was that he was 95% ready and able to return to being a professor—got to love that boy. I quickly stepped in to give her the real story, explaining that his boundless optimism masked critical skills and cognitive gaps that had not been tested.

In September, he began a ten-week evaluation that covered everything from teaching a cooking class (macaroni and cheese) to regular virtual check-ins. The formal evaluator noted that his Criteria Cognitive Aptitude Test results fell in the 18th percentile, significantly lower than his prior abilities. She proposed that job shadowing might help trigger his engineering memory—an unconventional approach we eagerly embraced. Her final recommendations urged supported employment with close oversight and structured instruction, similar to an apprenticeship.

To our dismay, Matt's counselor took an entirely different direction. She concluded that because Matt was "very smart," he didn’t need additional coaching—just an updated CV and a self-directed job hunt in secondary education. In time, the truth emerged: the agency lacked the mentorship network required to sustain an academic career. After months of waiting for them to find a suitable mentor, I advocated that they contract with Unity House–North East Career Planning—a vendor option within their purview—while Mike urged them to reach out directly to university settings. Both appeals were promptly shot down: the former was downplayed, and the latter was dismissed as unlikely. The path forward was drawn-out, convoluted, and fraught with misrepresentation and confusion.

This whole experience felt like panning for gold—spending immeasurable hours only to watch potential prospects wash away, leaving only a few rare nuggets worth keeping. Finding the right guidance made all the difference. Four key allies made our short list for ongoing advice, guidance, and backing: the Brain Injury Association, SAIL, ACCES-VR, and Jan, the life coach. Having knowledgeable sounding boards kept us grounded whenever official channels stalled. While ACCES-VR felt like a dead end at the time, it was ultimately added to our speed-dial—delivering a vital, unexpected contribution two years later.

Looking back on this administrative marathon, the sheer volume of calls, forms, and dead ends revealed a glaring systemic flaw: there was no central repository to guide families through re-entry after a life-altering injury. Caregivers are forced to reinvent the wheel in isolation while already managing full-time care duties, work, and family. To prevent burnout, no single person should shoulder this responsibility by themselves. While I relied on trusted friends and connections for assistance around the house and yard, in hindsight I see that I could have tapped them to brainstorm and make calls on our behalf, too.

That realization—and the exasperation of floundering in the dark—led me to create www.mattsroadtorecovery.com. It serves as a single "one-stop shop" for tools, leads, and practical encouragement, so future caregivers don't have to start from square one. While rooted in New York State resources, it also includes national directories and listings for all 50 states whenever possible, offering a template to help you find comparable alternatives wherever you live.

© 2026, Sarah Watkins