Olmstead and the ADA were meant to protect our rights—but implementation is inconsistent. “Most integrated setting” is sometimes applied so rigidly that it ignores the second half of the promise: the most integrated setting appropriate to the person’s needs.

That distinction matters. We all deserve the dignity of choice. But choice only matters when quality options exist—and when those options are truly appropriate. For some, an early morning trip to a bustling corner coffee shop might be ideal. For others, sipping coffee in a familiar, quiet home environment is far more suitable. Inclusion cannot be forced. It must be supported with thoughtful accommodations that reflect both what a person wants and what they need.

My daughter is nonspeaking and uses a letterboard to communicate. She also has a seizure disorder triggered by certain artificial ingredients, like specific sweeteners. If her class takes a trip to a bakery, that may be an “integrated” setting—but without precautions, it could expose her to unnecessary medical risks. Integration without thoughtful planning is not inclusion. The goal must always be to support each person in a way that balances their constellation of needs with the meaningful experiences they’d like to have.

Point One: Rights Protection Requires Equity and Recourse

This isn’t just about protecting families who speak up from retaliation—it’s about equity. We all deserve real choice, but that’s impossible when quality options are scarce.

Right now, 80% of OPWDD’s budget goes to certified models serving just 25% of those eligible. Families using self-direction may have to fight to get a $500 class covered—while certified programs receive $70,000 per person. That’s not equitable. That’s not sustainable. That’s not a functional system—it’s a fractured one.

We need a continuum of care that supports both sustainability and flexibility. Families must know their rights and how to assert them. That means:

• The ability to appeal when services are denied

• More ombudsmen to empower and advocate with us

• Virtual dashboards to expose gaps and track solutions

And most importantly, we must be included before policies are implemented. When policies shape our lives, we should help shape the policies. The IDDO ombudsman program is proof of concept. Let’s expand it statewide—for the entire disability community.

Point Two: System Accountability Requires System Change

When needed services fall through, families fill the gaps—or worse, get blamed for the failure.

The CDPAP overhaul showed what happens when change is made to us instead of with us. This rushed transition disregarded safeguards and destabilized care that keeps people out of institutions. This crisis was avoidable—with proper study and community input.

Now, looming federal Medicaid changes are creating fear. But people with disabilities and aging adults are exactly who Medicaid was designed to protect.

If New York chooses, we don’t have to carry the brunt of these shifts—especially after more than a decade of disinvestment. We ask the MISCC to advocate for:

• A pause on Medicaid Redesign Team recommendations until a true impact analysis is done

• Protected carve-outs for the populations Medicaid was built to serve

When families are included, we help develop practical, humane, and cost-conscious solutions.

Final Thought

Olmstead was never meant to be a checkbox. It was a promise—that people with disabilities would have choices, not ultimatums.

If we want truly integrated settings, we must stop expecting families to carry the system that was intended to support them. Many of us have rolled up our sleeves and built innovative, cost-effective models—only to watch them get buried under red tape.

With federal funding shifts underway, the apple cart is already tipped—whether we voted for it or not. But New York still has choices.

We can protect the people Medicaid was designed for. We can end the double standards.

If 14 or more people can live in a certified group home, why are self-directed households worried about losing subsidies for homes with four or five roommates? Why do group home residents get higher SSI checks, and why are the entities that run those homes exempt from property taxes—while self-directed families are excluded from those same benefits?

This is our chance to do better. This moment requires more than compliance. It demands that we finally honor the full spirit of Olmstead—and make people with disabilities a true budget priority.

Let’s stop offering one-size-fits-all systems and start investing in models that honor both the integration people seek and the accommodations they deserve.

Thank you.