A Special Needs Trust (SNT) is designed to protect a person’s eligibility for important public benefits, such as Social Security Administration’s (SSA) Supplemental Security Income (SSI) and Medicaid, while still allowing funds to enhance the beneficiary’s quality of life. Because these benefits are based on strict financial limits, each trust is required to follow certain rules that ensure the money is used appropriately and always for the sole benefit of the beneficiary.
So what does “sole benefit” mean? The sole benefit principle applies to all types of special needs trusts, whether the trust is funded with the beneficiary’s own money (first-party/self-funded) or with a third party’s funds (third-party/family-funded). This principle means that trust funds held in the special needs trust should be spent to directly improve the beneficiary’s life. This would include covering expenses such as personal care items, medical bills, therapy, education, recreation, electronics, furniture, transportation, and even vacations, so long as the spending clearly benefits the individual named as the Beneficiary of the SNT.
It is important to remember that the Trustee and/or Trust Manager must carefully review each submitted request to make sure it follows Social Security Administration (SSA) and Medicaid guidelines (for self-funded trusts) and aligns with the beneficiary’s best interest and Trust Plan (for family-funded trusts). One of the Trustee and Trust Manager’s roles when overseeing an SNT is to balance flexibility with protection; specifically, ensuring the trust supports the beneficiary’s needs without risking their benefit eligibility or violating regulations set by SSA and/or Medicaid.
When establishing an SNT, families might choose a pooled special needs trust, like the one offered by The Arc of Northern Virginia, because it offers a cost-effective way to establish and manage a trust. Pooled trusts are managed by nonprofit organizations that combine funds from multiple beneficiaries for investment purposes, while keeping each person’s account separate. This shared structure allows families to access professional trust management without the higher costs often associated with setting up a standalone trust through a private attorney or corporate trustee. In contrast, Standalone trusts are individually created by an attorney or financial institution and administered, often providing more customization but typically at a higher cost and with greater administrative responsibility for the family.
At the end of the day, both pooled and standalone special needs trusts follow the same core principles: protecting benefits, adhering to the sole benefit principle, and using funds thoughtfully to improve the beneficiary’s quality of life. In addition to managing daily needs, the Trustee and Trust Administrator remain responsible for planning for the future. This includes making sure the trust’s investments and spending decisions support the long-term sustainability of the beneficiary and of the special needs trust. By carefully evaluating spending patterns, future care needs, and life expectancy, they help ensure that funds will continue to meet the beneficiary’s needs for years to come.
When considering a special needs trust, and who to appoint as Trustee or Trust Manager, remember that the goal of any special needs trust, whether funded by the beneficiary or by family, remains focused on providing security, peace of mind, and flexibility, while always keeping the focus on the individual it was created to support.

When establishing a Special Needs Trust, one important step is deciding who will help communicate the beneficiary’s needs to the Trustee and/or Trust Manager. This person, sometimes referred to as a “Trust Advocate” or “Primary Representative”, serves as the bridge between the beneficiary and the trust. While the Primary Representative’s role is not to manage the money, they play an integral part in sharing insights about the beneficiary’s life, goals, and daily needs so the Trust Manager can make informed decisions that truly support the beneficiary’s overall well-being.
In some cases, the beneficiary may be able to speak for themselves and take on this role directly. In others, it may be a sibling, legal guardian, conservator, close friend, or support professional such as a residential provider who knows the person best. The right choice ultimately depends on who can best understand and represent the beneficiary’s wishes, communicate effectively with the Trust Manager, and remain involved in the beneficiary’s life over time.
Families sometimes worry about making the “perfect” choice, but it’s helpful to remember that this decision doesn’t have to be permanent. As the beneficiary grows and circumstances change, such as a shift in health, living situation, or family support, the trust documents can also be updated. In our experience, many families revisit this decision as part of ongoing planning to ensure the right person is always in place to advocate for their loved one.
The most important thing is that someone is available who will listen, care, and help make sure the beneficiary’s needs are heard. Trusts work best when they include a trusted voice who truly understands the person the trust was created to support, in addition to the Trust Plan held on file.

In Person – Our Annual Meet the Trustee Event

Date: Thursday, November 13, 2025
Time: 10:00am-11:30am or 6:00pm-7:30pm
Location: In Person Event (3060 Williams Drive, Suite 300, Fairfax, VA 22031) – Registration Required
We are excited to announce our upcoming Meet The Trustee event, where families, individuals with disabilities, service providers, attorneys, financial advisors and other community members can come together for an insightful open forum surrounding our Special Needs Trust program. The event will be moderated by the Director of Trusts, Ana Hughes, with a panel of Key Private Bank members there to answer your important questions surrounding trust administration, taxes, investments, executing wills, real estate, property management, and much more!
Reserve Your Spot Today
For the 10:00am option, register here!
For the 6:00pm option, register here!

Webinar – Planning for the Future: Tax & Special Needs Trusts

Date: Friday, November 14, 2025
Time: 09:00am
Location: Online (via Zoom) – Registration Required
Join us and KeyBank for an informative webinar designed to help families understand the taxation of special needs trusts at a high level. Learn what a Grantor Letter is and a K-1 and when one would be issued.

Disclosure: This webinar is not tax advice or planning but to gain a better understanding of how SNTs are taxed.
If interested in attending, please register here!

Ana Hughes, Director of Trusts: Ana oversees the operations and management of the Special Needs Trust department; she also offers consultations to potential clients, and supports through establishment appointments when wanting to open a Special Needs Trust. If you have feedback about your experience with us, she’s the one to talk to.

Kevin Collins, Assistant Director of Trusts: Kevin assists with various tasks relating to the management of existing special needs trust accounts with The Arc of Northern Virginia. Kevin supports the team in providing information surrounding questions of existing accounts, managing and maintaining accurate records for our clients, and spearheads trust management surrounding trust closures after notification of a beneficiary’s passing. Kevin also continues to work diligently in supporting the department with communication between the Trust Manager (The Arc of Northern Virginia) and our appointed trustee, Key Private Bank.

Trini Nsabimana, Account Manager: Trini spearheads the disbursement side of our program and ensures requests are reviewed and submitted through our standard process; she’s here to ensure outgoing funds are processed for review, and follows through with the payments from KeyBank. She’s also able to assist with reviewing disbursement options (forms, purchasing cards, etc.).

Allie Shelby, Account Coordinator, Outgoing Funds: Allie primarily supports in the disbursement process, often being the first point of contact for Trust clients when using a True Link or Key2Business card. Allie is available to support clients when utilizing these tools, and ensures compliance with our policies and regulations.

Grace Rhodes, Account Coordinator, Incoming Funds: Grace’s primary role within the department is to process all incoming funds, including ACHs, checks, and routing wire transfers. She can help with guiding how to add funds to a trust account, and support with the follow-through to ensure they’re deposited to the directed sub-account (i.e. trust).

Caroline Girgenti, Community & Client Relations Specialist: Caroline oversees all marketing efforts within our department, as well as supports onboarding and familiarizing new clients with our pooled trust program to ensure a thorough understanding in how the department operates.

Fiona Wright, Client Coordinator: Fiona assists existing clients with navigating the Trust department and can answer questions and offer guidance you may have about your existing account.