For Families
If you are reading this because you have a child with a developmental disability, you are not alone, and you are why we are building this.
We are three founding families ourselves. Our adult children live with profound disabilities. We know the exhaustion, the love, the constant background calculation of "what happens next?" We started this because the answer wasn't out there. We are building it together.
Who 1000 Villagers is for
The community is meant for adults (18+) with developmental disabilities. Some parents or designated family members hope to live nearby. That is a preference, not a condition of the adult's housing or HCBS.
We are also for families who want to be part of this for the right reasons, not just for the housing, but for the model. Living nearby other families who understand the work is part of what some of us want. The adult still chooses the setting, and can leave.
What being a member family means
We are still working out the formal expectations together, but in broad strokes, joining the community means:
- Nearby, if you want it. A parent may live nearby. The adult chooses their own home and housemates, if any. Housing and HCBS are not conditioned on a parent remaining.
- Separate housing and services. Housing should be held so the adult (or an SNT or family) leases or owns, without a service provider owning, leasing, managing, or having a financial relationship with the landlord (14 NYCRR 636-2.3(j)). Each adult, or their legally authorized representative, hires their own support people. A village rulebook does not condition HCBS. The circle of support is chosen by the individual except where law confers authority (14 NYCRR 636-1.2).
- Financial participation. Sized to your family's situation. Medicaid HCBS, if authorized, pays for services, not room and board. Rent is SSI, family, or a special needs trust, and a housing subsidy only if separately awarded. Families contribute to capital and to any parent home.
- Long-term design goal. We are designing for continuity. That is a goal, not a promise that anyone has a home for life or cannot leave.
What you get
- A home your adult child chooses, in a neighborhood designed with them in mind. They can leave and choose another setting. OPWDD and the CCO authorize services, not the village.
- A home for yourself, designed for aging in place.
- A community of families who get it, who do not need things explained.
- Continuity of care that does not depend on you alone, and that does not vanish when you do.
- A community meant to outlast its founders, with a foundation and endowment if we can build them. Continuity is a design goal, not a legal right to a particular house.
- Neighbors and a plan for what happens after the parents are gone, still subject to the adult's choice and to OPWDD rules.
The financial reality, honestly
We will not pretend this is free. Building and running a community of this kind takes real resources. We are committed to keeping family participation accessible, we will not exclude families on the basis of means alone.
Authorized HCBS, if the person has it, pays for services, not rent. Philanthropy may cover gaps. Member families contribute to capital and to the parents' residences, sized to what they can do. We will talk through specifics with each interested family individually, in confidence and without pressure.
How to explore membership
The earliest stage of this is just a conversation. No applications, no fees, no commitments. If reading this far has resonated, here is what we suggest:
- Read our guiding principles and the model. If those land true, the rest follows.
- Reach out. Send us a note. Tell us a little about your family. We will listen.
- Meet us. When timing permits, a video call or an in-person visit. We will tell you honestly where we are.
- Decide together. Membership is a slow, mutual decision. We will not rush it, and you should not.
You do not have to be ready to be in the conversation. Families come to us at very different stages, some with adult children already, some with teenagers, some still grieving a recent diagnosis. We welcome you wherever you are.
Do not wait for us
The community will take time to build, and some families cannot wait. There are steps you can take on your own, starting this month, that make your family more secure now and lay the groundwork for whatever comes next. We have written them down.
Have a housing question right now? Try our free Housing Navigator. It answers questions about renting, buying, Section 8, the OPWDD Housing Subsidy, SSI and benefits, and tenant rights for Upstate New York families, in plain language, any time of day.
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📄 Free guide: When You're Gone, a planning guide for parents of adults with profound disabilities.
Prefer email? Write to hello@1000villagers.org, we answer every message personally.