What You Can Do Now
You do not have to wait for the community to be built. There are things you can start this month that help your family today, and that lay the groundwork for everything that comes next.
Some of the families we talk to are in crisis right now. They do not have ten years to wait for a finished model. So here is the honest answer to "what do we do in the meantime?" Four steps you can take on your own, starting now. Every one of them makes your family more secure this year. Every one of them is a step we are taking ourselves. And none of them require us, a nonprofit, or anyone's permission but your own.
A note before you begin. We are parents, not benefits counselors or attorneys. What follows is what we have learned walking this road ourselves in New York. Treat it as a map, not as legal or financial advice. Your OPWDD Care Manager, the Front Door, and a special needs attorney are the people who can confirm what applies to your family.
Step one: Get into Self-Direction
Most families of adults with developmental disabilities in New York qualify for public support through Medicaid and OPWDD. The path that gives families the most control is called Self-Direction. Instead of placing your adult child into a program someone else runs, Self-Direction lets you build the plan around your child and choose the people who support them.
The way in is OPWDD's Front Door. If you have not started, that is the first call. It leads to an eligibility determination, a Care Manager, and a Life Plan. If your child already receives services but is not self-directing, ask your Care Manager how to move over. This can take months, which is exactly why beginning now matters.
This month: contact your regional OPWDD Front Door, or your Care Manager if you already have one, and say you want to explore Self-Direction.
Step two: Secure and itemize the budget
Once you are in Self-Direction, the support your child is entitled to becomes a real, itemized budget. This is one of the most important documents in your child's future, and most families never see it laid out clearly.
Work with your Care Manager and a Fiscal Intermediary to build it line by line: staffing hours, a Support Broker, community and transportation costs, and, where it applies, a housing subsidy. A Fiscal Intermediary is the organization that handles payroll and paperwork so you do not have to. A Support Broker helps you design and manage the plan. You do not have to carry any of this alone.
Knowing exactly what your child's budget contains, before any crisis forces the question, is what turns "I hope there is a plan" into "here is the plan."
This month: ask your Care Manager what your Fiscal Intermediary options are, and ask to see your child's budget itemized in full.
Step three: Build a shared-staff circle
The hardest part of this whole undertaking is not housing. It is finding, keeping, and paying good people. One family hiring alone is fragile. When a worker is sick or quits, there is no backup, and the caregiver burns out.
Families who live near one another can change that by coordinating their support workers. Two or three families, each self-directing their own child's supports, can share a trusted pool of staff. When one worker is out, another steps in. A worker who would burn out spending eight hours with one person does far better rotating among a few. And the families cover for each other. This is not about housing your children together. It is about making sure the adults in your circle are never left without support.
You can begin this with families you already know, long before any formal community exists.
This month: think of one or two nearby families in a situation like yours, and start the conversation about sharing staff.
Step four: Do the person-centered discovery
Before anyone can plan a life for your adult child, that life has to be known in detail, on paper, in a way that outlives you. This is the quiet, unglamorous work that everything else depends on.
Write it down: who your child is, how they communicate, what settles them and what sets them off, what they love, what a good day looks like, what their medical and behavioral needs really are. Ask what they actually want, as far as they can tell you. People who grew up together do not always want to live together at forty. Then build the circle of people who know and love your child and will still be there when you are not.
The families who do this early are the ones whose children are protected later. It is also the record that lets someone new step in and care for your child the way you would.
This month: start the document. A single page is enough to begin.
Why this matters, even before a community exists
Every one of these steps stands on its own. Do them, and your family is more secure this year, whether or not you ever join us. Do them, and if a community like ours does come together near you, you arrive ready: your funding secured, your circle formed, your child's needs documented.
This is also, honestly, how we are building. These four steps are the groundwork we are laying for our own children right now. We are writing them down so other families can walk the same path, and so no one has to start from nothing the way we did.
You do not have to wait, and you do not have to do it alone. If you want to compare notes, or you get stuck, write to us. We answer every message personally.
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General information from families, for New York State, current as of 2026. Programs and rules change. Confirm anything here with your OPWDD Care Manager, the Front Door, and, for legal and trust questions, a special needs attorney.