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 each adult's own authorized services (if they qualify), philanthropy for what those dollars will not cover, and family or trust dollars for rent. Each stream does work the others cannot.

Three funding streams

1. Public funding

New York's OPWDD may authorize an individualized plan of Medicaid Home and Community-Based Services (HCBS) waiver supports after eligibility and person-centered planning. Some adults receive substantial HCBS budgets. OPWDD sets each one. Nothing on this site is an offer or a promise of a dollar amount. Eligibility is individual; meeting the developmental disability definition in MHY 1.03(22) is not enough by itself for a waiver. Families who are already in Self-Direction hire their own staff. HCBS pays for services, not room and board. Rent is SSI, family, or a special needs trust, and a housing subsidy only if separately awarded.

On the numbers: we will not headline a dollar range as if it were typical or guaranteed. See OPWDD Self-Direction. We will develop firm, per-person budgets with a public-funding consultant only after a person is eligible and has a plan. This project is not operated or certified by OPWDD and does not speak for OPWDD or CMS.

For some families, authorized HCBS is the largest service stream. It is not automatic, and it does not pay rent. Public dollars already authorized for an adult follow that person. They are not a village budget.

To be exact: public funding pays only for the adult's own authorized services. It never pays for a parent's housing or care. 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)).

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.
• Help families buy respite from existing authorized providers when they need it.
• 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

Families may buy respite from existing authorized providers. We are not marketing an uncertified, collectively run respite agency as the staffing backup. If the project later applies to become an authorized provider, we will say so then (14 NYCRR 619.3).

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. Affordable-housing tax credits and public housing programs are an aspiration only. A disability-only campus can fail HCBS integration and housing-program rules; settings that isolate can face heightened scrutiny (14 NYCRR 636-2.3(b)(3), (i); 79 Fed. Reg. 2948). Philanthropy would still need to fill gaps. 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 services, if authorized, are paid by each adult's own HCBS budget. Rents are private (SSI, family, SNT) plus a housing subsidy only if separately awarded. Philanthropy may cover gap items. We will not treat public funding as covering housing and care together.

Anticipated legal structure

One principle shapes everything: the funding follows the person, not the building. Medicaid HCBS pays for services, never for room and board. 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 is not an OPWDD-operated or certified residence unless and until it holds an operating certificate. Moving here is not an OPWDD placement and can affect waiver if the setting is not an appropriate living arrangement under 14 NYCRR 635-10.3(b) (see Matter of Krooks v Delaney, 2022 NY Slip Op 01366). Living on a campus is the risk; attending a day program is a different question.

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 service organization, if any, that stays fully separate from housing. It does not own, lease, manage, or have a financial relationship with the landlord (14 NYCRR 636-2.3(j)), and it does not run the houses. Each adult (or their legally authorized representative) hires their own support people.
• A housing holder structured so the adult (or an SNT or family) leases or owns. Parents who want to live nearby may buy or rent their own homes. Housing and services do not share control.

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: authorized HCBS, if the person has it, covers services, not rent. Families purchase or rent 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.