Unfortunately, the current draft of the ADM does not deliver!
To Support the Right of People with Developmental Disabilities to Live in Housing of Their Choice
ADM #2026-02 Draft - OPWDD Housing Subsidy Must Be Withdrawn and Corrected.
The Coalition for Self-Direction (C4SD) provides these comments on behalf of the community of family advocates in New York State. We are a grass-roots organization of parent-volunteers who seek to promote and preserve freedom of choice for all people with developmental disabilities. We were heartened by the words in the opening statement of this ADM, that the “overarching premise of this Housing Subsidy program is to give people the ability to make their own choices and set their own goals when choosing where to live.”
Unfortunately, the current draft of the ADM does not deliver. While there are a handful of improvements, which we celebrate, this ADM as written will reduce options and eliminate choices. The draft effectively eliminates Provider Managed Housing, and explicitly prohibits people from making the choice to live in campus-like settings. The ADM codifies OPWDD’s opposition to providing a housing subsidy to people who need 24/7 care, which leaves this population with fewer options. The ADM talks of the self-determination rights of “all people, including those with developmental disabilities”, but then refuses to assist those with 24/7 needs, or who want to live in a commune-like setting. Another problem is that the ADM does not address inequities in the housing subsidy program. Specifically, the ADM keeps in place the payment approval process that routinely produces many weeks delay after the lease is signed. As a result, people with developmental disabilities routinely pay the full rent for several months— an insurmountable barrier for many.
C4SD appreciates the progress we see in some of these policy proposals, particularly doubling the eligibility period to 180 days, allowing people to formally state that they are choosing to live with others who have disabilities, and expanding to 14 the number of people with disabilities who can choose to live together. We greatly appreciate the emphasis on personal choice.
Unfortunately, the current draft of this ADM has too many provisions that add new restrictions. These limitations will create negative and unnecessary financial and human costs. The result will be an increased demand for placement of people with developmental disabilities into Certified Residential Opportunities, nursing homes, and homeless shelters.
Over the past few years, supported by an adequate housing subsidy, Providers and family members have launched a variety of innovative residential options. These pioneers bridge the gap between the highly regulated Certified Residential Opportunities, and fully independent living. If we are to achieve a truly sustainable system of care, policy must support the work of these innovators, not prohibit it.
Following are our ideas about how to make corrections to this proposed ADM, helping to clear a pathway to a more equitable and sustainable system of care.
Noted Progress in Housing Subsidy Policy
1. Extending to 180 days the provisional approval period.
2. Expanding to 14 the allowable number of housing units in a building or adjacent buildings that are designated for people with IDD.
3. Explicitly adding the ability to document an “informed choice” to live with other people with disabilities.
This last provision is particularly exciting. The concept of a well-documented informed choice could be applied to a wider range of circumstances, such as the choice to pool resources, to have a Provider as landlord, or to live in a commune-like setting.
Recommendations for Improvement
Expand the Options
Opportunities to live in the community should include campus settings, provider managed housing, and other environments where there is support for managing services and resources. Unfortunately, the draft ADM specifies that the subsidy cannot be used in any setting that matches the ADM’s definition of "Non-integrated Housing". It also prohibits use of the subsidy for "Provider Managed Housing".
Recommendation - Expand the opportunity to live in these settings when supported by an attestation of informed consent. For example, "I understand that my landlord is able to help coordinate shared staff for me and the other people in my apartment. I knowingly and willingly choose this arrangement. And I know that I retain the right to live there, if I should decide to use a different Provider for my services."
Protect the Rights of People With High Support Needs
The policy as written explicitly prohibits the use of the housing subsidy by people with 24/7 in-person support needs. This directly contradicts the stated aspiration of the ADM, to support the self-determination of “all people, including those with developmental disabilities”.
When this policy goes into effect, the only option for those with 24/7 needs will be a certified setting. This policy will also serve to increase the inequity of the system. Clever people will assert that the individual has a 23 hour a day need, with that last hour of coverage through remote monitoring. Thus the housing subsidy will be available to those who have 24/7 needs and who also have a savvy parent, or who are fortunate enough to have an excellent Support Broker or Care Manager.
Recommendation – Short term, delete this provision from the ADM. It is discriminatory and exclusionary.
Long term, alter the formulas for calculating the funding available to a person in the community, so that we become a system where money follows the person. The current formula places an artificially low cap on the funding available to people who are self-directing. Many people with 24/7 needs can choose to live in the community. If their cost in that setting is equal to or less than that of a certified setting, then the State has no compelling reason to forbid that choice. And for people who will cost more to serve in the community, the State can consider them on a case-by-case basis, rather than providing a blanket prohibition.
Streamline the Approval Process
The policy as written fails to address the routine delay in the initial subsidy payment, which serves as an inequitable barrier to access. Currently, the Fiscal Intermediary is not authorized to make any subsidy payments until OPWDD has provided final approval, which typically occurs 6 to 12 weeks after the signed lease is presented to the Regional Field Office.
During this wait, the renter has to come up with the full amount for the first two or three months, and they are never reimbursed.
In practice, under the process as currently defined, that final review often detects the need for additional documentation, and always involves coordination and communication between the RFO, the Fiscal Intermediary, the Care Manager and the applicant. The delay drives a fundamental inequity. People who want to access the Housing Subsidy must be prepared to pay two to four months of rent while awaiting final approval. Those without the required savings are effectively excluded from the Housing Subsidy program.
Recommendation - Switch over to a “provisional approval to pay” approach. When that provisional approval has been completed, the Regional Field Office has signed off on everything except for the lease and the QA checklist, and the Fiscal Intermediary is authorized to immediately begin funding the subsidy upon presentation of a signed lease.
There will be some individuals who do not receive final approval, and who then must break their lease. However, this already happens today. What does not happen today is access to the housing subsidy by the people who are financially disadvantaged, the people who need it most.
Change the Definition of Countable Income
The countable income calculation creates a barrier for people who have been approved by the State for OPWDD eligibility, and have not been approved by the Federal government for SSI/SSDI, and are not yet employed. Our educated guess is that this group is fewer than 2% of the OPWDD population. Almost by definition, these are people with low support needs, but they are not eligible for the housing subsidy since they have zero countable income under current OPWDD definition. Given their support needs, a certified residence is not appropriate, and is not a possibility without SSI/SSDI. Under current countable income policy, this ‘edge case’ population—not ‘disabled enough’ for the Social Security Administration, but not yet able to find employment—seems destined for homelessness, or other already overwhelmed and inappropriate systems of care.
Recommendation - Allow attestation of family support, or distributions from an ABLE account, to be part of countable income.
Commit to Annually Updating the Subsidy
The "Housing Subsidy Maximum Payment Standard" does not include a commitment to realign the Housing Subsidy to the housing market annually. NYS has been executing this for the past few years, after freezing it at the 2012 rate for nearly a decade. Annual updates are a necessary component of a stable and sustainable system of housing subsidies.
Recommendation – State that the subsidy will stay current with the HUD calculation of the Fair Market Rate. Or, if this commitment is one that goes beyond what OPWDD is permitted to do, then make it an aspiration and a recommendation to the legislature.
Provisions in ADM #2026-02 Draft That Require Clarification
1. The policy as written appears to forbid anyone form assisting with the coordination of shared staffing and living arrangements. "Any decisions by more than one (1) person receiving OPWDD services to live together and/or to share staffing must be made voluntarily and must not be required or coordinated by landlords, service providers, care managers, family members, etc." [our emphasis]. This must be corrected to prohibit coercion. We should allow coordination.
2. The policy as written creates substantial barriers to sharing resources in non-certified settings by defining non-integrated as an arrangement designed to "pool the resources of several people with disabilities". This must be reconsidered to allow people to choose to share resources. Pooling is another area where prohibition is not needed. Instead, the policy could call for a formal statement of informed choice in the LifePlan. The draft ADM already has a similar informed choice provision, allowing people to choose to live with other disabled people. This could easily be extended to the choice to pool resources with those others.
Provisions in prior version of Housing Subsidy ADM, that are absent from this draft
1. Restore the assurances that the subsidy will continue during an active dispute, as provided in the prior Housing Subsidy ADM, 2022-03, "Where OPWDD intends to reduce or terminate and individual’s Housing Subsidy and the individual has invoked the dispute resolution process outlined herein, their Housing Subsidy will continue to be paid, and the amount will remain unchanged until the dispute resolution process has been completed." [our emphasis].
This provision protects the rights of people with developmental disabilities. There is no equivalent statement in the new draft ADM.
2. Restore basing the subsidy cap on whichever is lower: bedrooms or occupants.
The prior ADM stated:
"The OPWDD Housing Subsidy rent calculation methodology sets the Maximum Household Housing Subsidy by either the number of bedrooms in the housing unit or the number of people living there, whichever is lower." [our emphasis]
This allows a few lucky people to have a spare room that they can use as a home office or a game room, because they found an affordable apartment which has one more bedroom than they need. There is no equivalent statement in the new draft ADM.
In closing…
We urge OPWDD to revise draft ADM-2026-02 in line with our recommendations, prior to issuance.
This will greatly enhance the possibility that all people have “the ability to make their own choices and set their own goals when choosing where to live.”
All people should include those who have 24/7 needs, those who choose to have a Provider as their landlord, those who choose to pool resources. All should even include people who choose to live in settings that we personally would not select, such as an intentional community. I don’t want to live on a commune, but I support the right of anyone else to make that choice, including people with developmental disabilities. It would be wonderful if the NYS Housing Subsidy policy supported these choices.
Thank you for your consideration and for your support of people with developmental disabilities. We are available to provide additional detail and clarification.
Sincerely,
Jim Karpe
Father of two adults with I/DD
On Behalf of The Board of The Coalition for Self-Direction -
Heather Burroughs, Stacey Cagan, Jackie Ceonzo, Jim Karpe, Susana Montes, Chris Palega, Molly Sebastian