Frequently Asked Questions

The community is designed for adults (18+) with developmental disabilities, together with their parents or designated family members. We are particularly oriented to families whose adult children need intensive daily support and for whom standard independent-living models are not realistic.

We use “profound disabilities” to describe adults who require substantial daily support, often have limited or no spoken communication, and may have co-occurring intellectual disability. Many of our own adult children are autistic. We are deliberate about this language because services increasingly favor more independent adults, leaving families like ours without options. Our community is shaped around the needs of those most often left behind.

The model is built around the principles, not the diagnosis. Families whose adult children have other significant developmental disabilities may find that the model fits, please reach out. Some details (regulatory funding paths, specific support staff, sensory design choices) will vary, and we will be honest with you about what we know and what we don't.

Because the existing options separate them, and the separation is the wound. Most residential programs for adults with developmental disabilities step in only when a parent dies or can no longer cope, often at a moment of crisis. By designing for parents and adult children to live together, we close the cliff. Continuity of relationship is itself a clinical good.

The community is planned for upstate New York. A small pilot may begin on land already owned by a founding family in Earlville, NY, with additional homes added as the founding village takes shape. We are flexible on the final site; we are not flexible on the model.

Honestly: we don't know yet. We are at the earliest stages, site, structure, funding, partners. A realistic horizon for a small pilot is two to three years; the founding village is five-plus years away. We will not promise dates we cannot keep.

Group homes are typically state-certified residences where staff support 4 to 6 adults under the rules of the certifying agency. They serve a vital function and many do it well, but they do not include parents, and certification hands the rule-making to the state. 1000 Villagers is different on both counts: parents live alongside their adult children, and our homes stay non-certified and family-controlled. Each family self-directs their own child's publicly funded supports rather than handing that authority over. We use public funding for the adult children's care while privately funding the parents' homes.

Many residential communities, including some wonderful life-sharing communities, serve adults whose families are no longer in the picture. Others offer cradle-to-grave care, often at significant scale. 1000 Villagers is built for families to stay together, at smaller scale. Same humane impulse, applied at a different stage of life.

SpeciallyAble is our closest peer. They are building a multi-generational co-housing community of twenty families in Oakley, CA, with homes for parents and adult children in one community, a close cousin of our model. We have learned a great deal from their public materials and we remain in informal contact with founders of similar projects elsewhere. The world needs more than one of these.

Three streams: public funding (New York's OPWDD, Medicaid waivers, Special Needs Trusts, rental subsidies) flowing through rental income; philanthropy covering capital, construction, and gap items; and modest earned revenue from respite services. Public dollars pay only for each adult child's own self-directed supports and community participation, never for a parent's housing or care. Read more in The Math.

Specifics are being worked out with our founding families and our legal and financial advisors. In broad strokes: public funding covers most of the adult-child portion; families contribute to capital and to the parents' residences, sized to what they can do. We are committed to keeping participation accessible and will discuss specifics with each interested family individually, in confidence.

Usually not, and it is better to know that early. As we understand OPWDD's rules, a relative can be paid to deliver waiver services only if they are not the participant's parent, legal guardian, spouse, or adult child, and only if they do not live in the same home. Narrow exceptions exist but need specific authorization from the Commissioner, decided case by case, so no family should plan around getting one. Our model works with that rather than against it: parents stay close and stay in charge of the plan, and the paid support comes from people we hire together. There is more detail, and where it comes from, on What You Can Do Now.

Not yet. We are in active conversation with the Doug Flutie Jr. Foundation for Autism about fiscal sponsorship, the arrangement that would allow us to receive tax-deductible donations through them. When that is in place, this page will say so plainly. Until then, we are not accepting donations.

One idea anchors it: funding follows the person, not the building. Public support attaches to each adult child and can be delivered in a home the family controls, so the homes need not become state-certified facilities. We anticipate a small family of entities, each with one job: a foundation that holds the community's endowment and is built to outlast the founders; a family-governed service organization (family-controlled, not a state-certified residence) that delivers the adult children's self-directed supports; and a housing entity that owns the residences, where parents live as tenants too. Keeping them separate keeps rent, care, and charitable gifts from getting tangled. We are working through the details with legal counsel, including safeguards that lock the mission into our founding documents, protect the land from ever being repurposed, and secure each resident’s home as a legal right.

Care never rests on a single person. Each adult’s support is self-directed and delivered by a small, trained team rather than one worker, so a sick day or a resignation does not leave a gap. Because two or three adults share a home, staffing and coverage are shared too. The community runs its own respite agency, open to member families and the wider public, that doubles as built-in back-up staffing, and the founding families remain present as a standing safety net. We are still finalizing these staffing details with our advisors, and we will be honest with families about what is settled and what is still in progress.

They will work it out themselves, with their families and the people who support them. Before anyone moves in, each household will write its own ground rules: noise and music, guests, food, what is shared space and what is private, and relationships and privacy, including the honest conversations that are far easier held early than after something has gone wrong. It is meant to be a negotiated agreement among the people who share the home rather than a policy handed down, revisited as people change, and written with each resident taking part in the way that works for them, including those who do not use speech. It sits alongside, and does not replace, the written agreement that sets out a support worker's duties and hours. None of it is written yet and we will not pretend otherwise, but it is one of the parts we intend to do carefully.

The adult child stays. The community is being designed so that no resident is displaced because of a death in the family. The community continues to be home, with continuity of care and the support of the other families. We intend each resident’s place to be secured as a legal right, written into the property itself, not a policy a future administration could change.

Our firm commitment is that no resident is removed for difficult behavior. Behavior is a form of communication, particularly for people with developmental disabilities, and the right response is more support, not removal. We are designing the community, the staff, and the physical environment so that residents can be safely supported through difficult times. The model is not built for the easy days. If safety ever requires a different arrangement, our commitment is that it happens within the community, with more support, not by sending someone away.

Not yet, there is nothing built to tour. As the pilot site develops, we will host site visits for interested families. In the meantime, we are happy to meet by video call or in person to talk through the model.

You can join the conversation, spread the word, and, when we are ready, donate. Every name on our list is evidence to foundations and state agencies that the need is real and the community is real. Read more on our Support page.