I Miss IEP Meetings
Advocating for a disabled adult comes with a lot fewer legal protections — and leaders who feel little obligation to listen.
Some parents look forward to their final IEP meeting with glee. I didn’t, when our time came. I knew adult services came with far fewer protections, overseen by an agency that does not have the same legal obligations to its constituents as schools do. Faced with school district staff who felt unable or unwilling to do the right thing for Leah, I could wield federal law in pointed emails and parent input statements. Issues sometimes took longer to resolve than I wanted, but IDEA gave us a path forward, and I usually got what Leah needed.
There seems to be no winning at the adult level. Only the sense that every voicemail left or email sent to our Developmental Disabilities Administration will be about as effective as screaming into a void.
In 2026, advocacy has never been more crucial or more challenging. State budget issues are impacting Leah and Maryland’s other vulnerable residents in the form of cuts to services and staff wages. I had to learn to interact with a new audience: Politicians. The fact that I (and many others) have been much less successful at bringing them around than I ever was with school staff, administrators, and the occasional lawyer has been humbling. We weren’t able to stop the budget cuts proposed by DDA, rubber-stamped by the Maryland General Assembly, and signed by Governor Wes Moore. Many senators and delegates telegraphed empathy during hours of testimony from stakeholders, only to fall in line when the vote came around.
Moving forward
Advocates left the legislative session determined not to let the issues fade until the General Assembly reconvenes in 2027. We want legislators to walk with our loved ones as we navigate a system that appears more indifferent, and crueler, year over year.
I’ll preserve my own efforts here, through posts, beginning with my testimony before the Maryland Senate Health and Human Services Subcommittee in February, in a hearing room that initially overflowed with speakers. Putting together a two-minute speech is no joke; I don’t love reading from scripted notes, but the only way to be sure I could make my point within the allocated time was to write down my thoughts and practice.
The text of my testimony:
“Good morning. I’m Alison Hamilton, from Crofton, and I am both parent and guardian to Leah, a young woman with autism who receives self-directed services through DDA.
“I tried to find a provider agency when Leah exited school in 2022. I was not successful. Some agencies were in flux from COVID, a couple had bright, red flags flying (I’m a social worker, so my radar is pretty good), and the one that seemed like an excellent fit, specializing in her disability, rejected her because she required 1:1 support. She’s not alone — it’s been a common problem among self-directed participants. If they can’t fit neatly into a 1:4 staffing ratio, if they have behavior needs, or complex medical issues, they are a lot less likely to find a place at a provider agency.
“That’s how we got here — out of necessity. It was clear that self-direction was the only way for Leah to access services.
“As the Director of Operations and HR department of Team Leah, I can tell you that if these proposed wage cuts move forward, Leah’s lead direct support professional, who is excellent, won’t be able to afford to stay with us. I am not looking forward to the day when I have to tell Leah that Nijha can’t be with us anymore.
“These cuts will create a situation in which some of Maryland’s neediest residents will be denied services. Not technically. On paper, and in the LTSS system, Leah will still have a person-centered plan. She’ll still have a budget. But in reality, if we lose Nijha we will have great difficulty replacing her. And at the top BLS rate of $23/hour, I doubt we’ll be able to attract any serious applicants. So Leah won’t be receiving services if we can’t find replacement staff able to work for the lower rate. In the real world, how is that any different from a denial of services? And how does that fit with ‘no one left behind’?
“Thank you for your attention, and, I hope, your help.”