Grant Opportunity: Supporting Aging Caregivers of Adults with Developmental Disabilities (DD)

To fund one grantee up to $250,000 per year for up to 5 years ($1,250,000 total, subject to availability of funding) to support an innovative and scalable model to help people with developmental disabilities and their aging caregivers to plan for long-term residential stability, safety, and well-being when their caregivers are no longer able to provide support.

Many adults with developmental disabilities (DD) in the United States live with family caregivers, many of whom are aging and increasingly unable to provide ongoing support. Nationally, an estimated 75% of adults with DD live with a parent or caregiver, and nearly one million households include an adult with DD supported by a caregiver over the age of 60. At the same time, people with DD are living longer, with life expectancy now approaching 70 years. As both people with DD and their caregivers age, the likelihood of caregiving disruption, housing instability, and crisis placement increases significantly.

In New York State, caregivers of adults with DD face similar challenges. Approximately 70% of people with DD live with a family caregiver. Among these caregivers, 25% are over the age of 60, with an additional 35% between the ages of 41 and 59. Of the approximately 130,000 individuals served through the New York State Office for People with Developmental Disabilities (OPWDD), approximately 35,000 reside in certified residential settings, while the majority, approximately 95,000 people, live with family, independently, or in other non-certified housing arrangements.  This data emphasizes the extent to which the system relies on family caregivers to sustain housing and support.

State-level resources such as the NYS Office for the Aging’s Future Planning Guidebook for Older Caregivers of Adults with DD also highlight that aging caregivers often feel overwhelmed by the prospect of long-term planning and need guidance on housing, financial, and legal resources. This need was further reinforced by stakeholder engagement during the development of the CDD’s 2027-2031 State Plan, where both people with DD and their families identified housing and future planning as top priorities, alongside limited awareness of available options and supports.

As caregivers age, they may become less able to provide intensive support, may experience sudden health care emergencies, or pass away. Without intentional planning, people with DD are at increased risk of experiencing service disruption, loss of housing, or emergency placement when their caregivers are no longer able to provide support. In many cases, siblings or extended family become the default or unexpected caregivers during these transitions, often assuming significant responsibility with little preparation or formal support.

This concern is particularly impactful for families supporting people with higher or more complex needs, as well as those living in non-certified settings where fewer structured supports, and planning pathways exist. The absence of coordinated and proactive support leaves many families unprepared for inevitable transitions.

Approach:

The CDD will seek proposals which focus on supporting an innovative and scalable model to help people with developmental disabilities and their aging caregivers to plan for long-term residential stability, safety, and well-being when caregivers are no longer able to provide support. This should be done by developing actionable, person-centered solutions that reduce crisis placements and improve stability for people with DD. Proposals should focus on supporting families through education, direct support, planning and other opportunities. The prospective grantee should also identify strategies to convene key stakeholders to collaborate on solutions, with a focus on scaling and sustaining the work. While proposals will be encouraged to prioritize caregivers over the age of 60 who support individuals with more complex needs, they should also aim to be inclusive of all families and family members who could benefit. 

The prospective grantee would be expected to develop a project which integrates:

1. housing stability and innovative living arrangements,
2. financial and benefits planning,
3. preparation for future support and caregiving,
4. legal considerations and decision-making,
5. health care considerations, and
6. crisis prevention

Recognizing that navigating complex systems can be challenging for families, proposals should explore the development of enhanced support roles, such as future planning navigators, specialized coordinators, or enhanced brokerage models, that can help families turn plans into actionable steps. 

Housing solutions should be a primary focus, exploring a variety of options including certified residential opportunities, aging in place, shared living arrangements, paid neighbors and natural supports, and other community-based solutions. While the prospective grantee will be encouraged to explore all housing options available to families, the approach to planning should be person-centered and explore both the benefits and risks of each housing model. The prospective grantee should work within the framework of the Home and Community Based Services (HCBS) Settings Rule, and consider safeguards and legal review to mitigate risk for the person with DD.

Education and capacity building should also be key components of this work, with a focus on long-term planning and financial and benefits literacy. Efforts should be directed not only toward caregivers, but also toward the full circle of support for the person with DD, including siblings, extended family members and other trusted supporters who may play a future role in care and decision-making. Training opportunities should also engage professionals who support long-term planning, such as care managers, brokers, fiscal intermediaries, attorneys, and health care providers. Training topics should align with the key components of future planning outlined above, including financial and benefits training, legal decision-making, preparation for future caregiving roles, use of self-direction, and coordination of health and behavioral support. 

The initiative should also encourage the integration of technology and health-related support into future planning efforts. This may include the use of digital tools to organize and communicate plans, as well as models that better address the increasing medical and behavioral complexities experienced by aging individuals with DD. Proposals that incorporate coordination beyond traditional service roles, particularly for people with co-occurring conditions or intensive support needs will be encouraged.

Additionally, this initiative should place a strong emphasis on crisis prevention and proactive planning. Proposals should look to develop frameworks for proactive planning, clear transition timelines, and triggers that allow action before a crisis may occur, reducing the risk of emergency placements.

Expected Key Deliverables:

The selected grantee will develop, implement and evaluate an initiative to support people with developmental disabilities and their aging caregivers. Key Deliverables include:

1. Develop an innovative and scalable model to help people with developmental disabilities and their aging caregivers to plan for long-term residential stability, safety, and well-being when caregivers are no longer able to provide support. 
2. Provide direct assistance to families with priority given to caregivers aged 60 and older supporting individuals with complex support needs. 
3. Convene and engage with stakeholders including people with developmental disabilities and their families throughout the project period to identify barriers, inform project activities, and develop recommendations for improving future planning. 
4. Deliver training and educational opportunities for caregivers, siblings, self-advocates, professionals and other relevant stakeholders. 
5. Collect participant and project data, evaluate implementation and outcomes and identify promising practices learned, and opportunities for replication and sustainability. Collected data will be provided to the CDD on a quarterly basis and should culminate into a final impact report, including recommendations on how New York State can meet this growing need. 

Desired Project Outcomes:

While the specific outcomes of the program will depend on the selected proposal, the CDD seeks projects that demonstrate progress towards the following outcomes: 

Family Outcomes

1. Families demonstrate increased preparedness and confidence in navigating future support needs.
2. Greater housing stability and continuity of support for people with developmental disabilities.
3. Reduced reliance on emergency or crisis-driven placements.
4. Increased awareness and use of available benefits, services, and community resources.

Systems Outcomes

1. Identification and evaluation of promising practices that can inform future efforts.
2. Improved understanding of the needs of aging caregivers and the people they support.
3. Recommendations for policy and systems improvements that strengthen New York's long-term response to this growing issue.

Eligible organizations:

• Nonprofit organizations (note: the lead applicant cannot be a for-profit organization; however, for-profit organizations may serve as subcontractors to the lead applicant)
• Public or private institutions, such as universities, colleges, or hospitals
• Disability-service organizations
• Community-based organizations
• Tribal organizations
• Consortia, groups, or partnerships among organizations

• Statewide Financial System (SFS) prequalification is required for all not-for-profit organizations seeking grant funding from New York State.

Organizations whose staff were involved in the development of this project or Request for Proposal (RFP) are not eligible to directly apply or be included as a sub-contractor for another applicant.

New York State requires nonprofit organizations to register in the Statewide Financial System (SFS) and complete the Vendor Prequalification process, if interested in applying for state funding opportunities. Government entities are not required to prequalify in SFS but must register in SFS to apply.

For proposals to be evaluated, all nonprofit organizations applying for this grant opportunity MUST prequalify by the time and date of submission. Any applicant who submits a proposal that is not prequalified in SFS on the Proposal Due Date listed in the Important Dates table, will be disqualified from further consideration.

Below are links where you can find more information on SFS registration and prequalification requirements.

• Register with the Statewide Financial System: https://www.sfs.ny.gov/
• Get Prequalified in the Statewide Financial System: https://grantsmanagement.ny.gov/get-prequalified
• SFS Registration and Prequalification Questions: Specific questions about registering in the Statewide Financial System (SFS) or getting prequalified in SFS can be directed to the SFS Help desk. The best way to get a fast response from SFS is through email.  Monday – Friday, 8:00 a.m.– 5:00 p.m. [email protected], (518) 457-7717

NOTE: Nonprofit vendors and organizations are strongly encouraged to begin this process as soon as possible to participate in this opportunity. New York State reserves 5-10 business days from the receipt of complete Prequalification applications to conduct its review. If supplementary information or updates are required, review times will be longer.

How to Apply

Instructions on how to apply for this opportunity can be found in the Supporting Aging Caregivers RFP, which is also located in the Opportunity Documents section below.

Questions about this RFP:

Questions regarding this specific RFP must be submitted no later than September 16, 2026.  All questions should be submitted through Qualtrics, using this link: Qualtrics Survey | Qualtrics Experience Management.

Designated Agency Contact:

CDD has assigned a Program Planner as the Designated Contact / Issuing Officer for this project. The Program Planner or a designee shall be the sole point of contact regarding the RFP from the date of issuance of the RFP until the issuance of the Notice of Award letter. To avoid being deemed non-responsive, an applicant is restricted from contacting any other personnel of the CDD regarding the RFP. Certain findings of non-responsibility can result in rejection for a contract award.