Frequently Asked Questions

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 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 making it possible for parents who want to live nearby to do so, we hope to soften that cliff. Continuity of relationship matters. Housing and HCBS are not conditioned on a parent remaining.

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 run under an operating certificate. They serve a vital function and many do it well. 1000 Villagers is not an OPWDD-operated or certified residence unless and until it holds an operating certificate. Parents who want to live nearby may do so. Each adult, or their legally authorized representative, hires their own support people. Public dollars pay for authorized services, not a parent's home.

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.

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. Philanthropy may cover capital and gaps. Families may buy respite from existing authorized providers. Public dollars pay only for each adult's own authorized services, 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: authorized HCBS, if the person has it, covers services, not rent; families contribute to capital and to any parent home, 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 who want to stay close may do so, and paid support is hired by the adult or their legally authorized representative. 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. 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)). A service organization, if any, is separate and does not run the houses. A foundation, if we build one, holds endowment. Continuity is a design goal, not a legal right to a particular home. This project intends to comply with 14 NYCRR 636-1.2 and 14 NYCRR 636-2 / 42 CFR 441.301(c)(4)-(5). It is not certified unless it holds an operating certificate.

Each adult, or their legally authorized representative, hires their own support people. We do not sell pooled staff as a village program. Families may buy respite from existing authorized providers. If the project later applies to become an authorized provider, we will say so then (14 NYCRR 619.3). Neighbor families may be nearby. We will be honest about what is settled and what is still in progress.

Sharing a home is a choice, not a placement. If adults choose to share, they work out how to live together with the people they choose. A village rulebook does not condition housing or HCBS. The circle of support is chosen by the individual except where law confers authority (14 NYCRR 636-1.2).

Continuity is a design goal, not a promise that no one is displaced or that anyone has a legal right to a particular home. The adult can leave and choose another setting. OPWDD and the CCO authorize services, not the village. Neighbor families may stay present. Housing should still be held by the adult, an SNT, or family, separate from any service provider.

Behavior is a form of communication, and the right response is more support, not exile. We cannot promise that no one will ever need a different setting. The adult chooses the setting, with the people they choose, through person-centered planning. OPWDD and the CCO authorize services. Safety may require a different arrangement; that decision is not the village's to make as a program.

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.

No. 1000 Villagers is not operated or certified by OPWDD. It is not an OPWDD-operated or certified residence unless and until it holds an operating certificate. This project intends to comply with person-centered planning (14 NYCRR 636-1.2) and HCBS settings rules (14 NYCRR 636-2 / 42 CFR 441.301(c)(4)-(5)). It does not determine eligibility, authorize Medicaid or HCBS, or speak for OPWDD or CMS.

Only if the actual living arrangement is one 14 NYCRR 635-10.3 allows (own or family home, supervised or supportive community residence, certified IRA, or certified family care) and the setting meets HCBS rules. A self-contained campus that is not on that list can cause HCBS waiver and Medicaid Service Coordination to end when the person moves in. Living on a campus is the risk; attending a day program is a different question (Matter of Krooks v Delaney, 2022 NY Slip Op 01366). Moving here is not an OPWDD placement. We will not promise that a waiver continues.

The adult, with the people they choose, through person-centered planning (14 NYCRR 636-1.2). The adult can leave and choose another setting. OPWDD and the CCO authorize services, not the village. A parent living nearby is a preference some families want. It is not a condition of the adult's housing or HCBS.

The person, or their legally authorized representative, including through Self-Direction. Not a village program. Neighbors may live nearby. We do not sell pooling staff as a program, and we do not describe an uncertified IRA or community residence.