Ella was approved for OPWDD services at just three years old, which included Medicaid and self-direction support. While this was a tremendous blessing, it also brought a wave of questions and uncertainty. To help us navigate the process, we were paired with a care manager whose role was to connect us with resources and guide us through the more overwhelming parts of Ella’s journey. 

Fast forward seven years—Ella is now ten. Since her initial approval, we’ve gone through three different care management agencies and at least six individual care managers (I eventually stopped keeping track). There was a short period, before the system transitioned to care management, when we had incredible support. Unfortunately, that changed with the new process, and that level of support initially ended.

Our story is far from unique. I’ve spoken with more families than I can count who share the same frustration—that their child’s care manager is often unhelpful and lacks the knowledge needed to truly support them. Many parents are unclear about what a care manager’s role actually is, and most find that it’s often quicker and less stressful to handle challenges on their own rather than wait for the help that may never come.

Knowing what these care management agencies were billing for each visit with Ella—and seeing that they were doing the bare minimum—had this mama bear ready to explode. Every question I asked was met with, “I’ll get back to you,” and I’d wait months for any kind of follow-up. Then came the breaking point. One day, Ella’s care manager showed up for a quick visit to have me sign some paperwork. Ella wasn’t home yet. I signed the forms, and just as I handed them back, her school bus pulled up. The care manager glanced through the window, said, “I saw her—that’s good enough to count this time,” and added, “I’ll call you soon to schedule our next visit.” And just like that, she left.

Within ten minutes, I was on the phone with Senator Skoufis’ office—absolutely fired up. I shared our story with his incredible staff and eventually sat down with the Senator himself. He listened, understood, and validated my frustrations. He made a call and soon after, a woman from a new care management agency—someone in a leadership role—reached out to me directly. I made my expectations clear from the start. That’s when we were assigned the most proactive and supportive care manager Ella has had to date.

While Ella finally having an incredible care manager was a huge relief for our family, it didn’t change the reality that hundreds of other families across New York State are still struggling. Many are assigned care managers who lack the knowledge, experience, or motivation to truly help. I’ve seen firsthand that even some care managers share the same frustrations—often unable to access the information they need to support families effectively.

Through ongoing collaboration with Senator Skoufis’ team, a bill was drafted in Ella’s name. This legislation would require all care managers to complete a comprehensive training program through their agency before being assigned any clients. The law outlines nine key areas of training to ensure care managers are properly prepared to serve the families who rely on them.

I was told it could take years—if it ever happened at all—for Ella’s Law to pass. On March 5, 2025, the bill was sent to the Disabilities Committee, where it has remained ever since. Now is the time to shine a light on this legislation and push for the change our children deserve, so that both current and future families can finally receive the support they were promised.

If you live in New York State, please take a moment to click the link below and show your support!

https://www.nysenate.gov/legislation/bills/2025/S6153

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