The Math

How the village pays for itself.

A residential community for adults with developmental disabilities and their aging parents is a serious undertaking to build and to run. The honest answer to "how is this paid for?" is: a combination of public funding that already exists for our population, philanthropy that covers what public funding will not, and modest earned revenue from the community itself. Each stream does work the others cannot.

Three funding streams

1. Public funding

New York's OPWDD (Office for People With Developmental Disabilities) authorizes an individualized plan of Medicaid Home and Community-Based Services (HCBS) waiver supports for each eligible adult, daily support staff, day programs, respite, assistive technology, worth on the order of $80,000 to $150,000 a year, depending on a person's level of need. Families can elect Self-Direction to design that support mix themselves and hire their own staff. This stream pays for care; housing is funded separately, through rent met by Social Security, family contributions, Special Needs Trusts, and OPWDD housing subsidies.

This is the single largest stream, and the reason the model is financially viable at all. Without it, we would be asking families to pay for a level of support that no individual family can afford. With it, the public dollars already allocated for these adults can be put to work in a setting that families themselves help shape.

To be exact about what these dollars do and do not cover: public funding pays only for the adult child's own individualized, self-directed supports, organized around their personal plan and their participation in the wider community, and delivered in a home the family controls. It never pays for a parent's housing or care. The parents' homes sit on the other side of a firm wall, funded privately.

2. Philanthropy

Donations cover what public funding will not, and there is a great deal that public funding will not cover. Among the gap items:

• Capital and construction of the village itself.
• Accessible vehicles for medical and community transport.
• Janitorial, landscaping, and facility services beyond what care budgets fund.
• Respite capacity for member families in emergencies.
• Staffing enhancements and quality-of-life programming.
• Dining services for weekly communal meals.
• Recreational opportunities and community outings.

Philanthropy is also what lets us start. Public funding flows once residents are in residence; capital has to be raised before there is anywhere for them to live.

3. Earned revenue

This is the piece we are most excited about. A respite agency, run by the community and open to member families and the wider public, can generate modest ongoing income. Just as importantly, it doubles as built-in back-up staffing, the missing piece that makes non-certified, family-run housing dependable. A team already trained and on hand for respite gives the village flexible coverage the moment a worker is sick, leaves, or a crisis arrives.

A preliminary budget framework

Final figures will be developed with our architects and a public-funding consultant. The framework below is how we are thinking about it.

Phase 1, Planning and pre-development

Feasibility and site studies, architectural concept and renderings, legal structuring, public-funding navigation, and a possible small-scale pilot. This is the phase for which we are seeking philanthropic support today, through our anticipated fiscal sponsorship with the Doug Flutie Jr. Foundation for Autism.

Phase 2, Acquisition and construction

Land and homes for the first 10 to 12 families, which we anticipate financing as an integrated, mixed-income development, layering affordable-housing tax-credit equity with public housing programs, with philanthropy filling the gap. For reference, comparable purpose-built autism communities have varied widely: First Place, Phoenix was reported at roughly $15.6M for an urban 81,000 sq ft project that opened in 2018. Our figure will depend on site, scale, and whether we build new or adapt existing property.

Phase 3, Annual operations

Day-to-day operation funded substantially by public funding (roughly $80,000 to $150,000 per adult resident through OPWDD, by need), Medicaid waivers, Special Needs Trusts, and rents, with philanthropy covering gap items and respite generating modest income.

Anticipated legal structure

One principle shapes everything: the funding follows the person, not the building. New York funding rules keep a person's care dollars separate from their housing, Medicaid pays for services, never for room and board, and those services can be delivered in a person's own, non-certified home. So we do not need to turn our homes into state-certified facilities to draw the public support our children are entitled to. The homes stay family-controlled, and the funded supports come to them.

We anticipate a small family of entities, each with one job:

• A foundation that holds the community's endowment, the part built to outlast the founders, so the community does not lean on any one family's lifetime.
• A family-governed service organization that coordinates the adult children's self-directed supports and runs a respite agency serving member families and the wider community, which doubles as built-in back-up staffing. It is family-controlled, not a state-certified residence, so the rule-making stays with families.
• A community-owned housing arm that owns and maintains the homes where the adult residents live. Parents purchase and own their own homes.

Keeping these separate protects each funding stream and keeps three kinds of money, rent, care, and charitable gifts, from ever getting tangled. We are engaging legal counsel to finalize the details.

In the interim, while we work through structuring, fiscal sponsorship through the Doug Flutie Jr. Foundation for Autism lets us begin receiving donations responsibly without resolving the final entity structure first. This is also why donations are not yet being accepted on this site, we would rather wait for the sponsorship to be in place than rush and do it poorly.

For donors and partners

If you are considering a gift, a grant, or a partnership: we are not yet accepting tax-deductible donations directly, but we are gladly in conversation. When the sponsorship is signed, your gift will be processed, acknowledged, and reported through the Foundation, and put to work on the phase items above.

If you are at a foundation, a public agency, a peer community, or simply a family who would like to talk through the model: please reach out. We answer every email.

For families

What does it cost a family to participate? Specifics depend on each family's situation, and we will discuss them with you individually, in confidence. In broad strokes: public funding covers most of the adult-child portion; families purchase their own homes and contribute to community capital, sized to what they can do. We are committed to keeping participation accessible.

For more on what membership looks like, see For Families.