How to Set Up a Special Needs Trust

Turn "What If?" into a Reliable Plan for the Future

"What if?"
That's the question parents ask themselves about the future of their child with a disability.
Many things are out of your control. But money for the future doesn't have to be one of them.

What if…you could make sure your child has a way to be happier and more secure?

What if…you could make sure government benefits aren't threatened by unexpected money?

What if…you could make sure your child's money is managed by experts in finance and disability policy?

What if…you could put this into place now?

You can.

About the Special Needs Trust from The Arc of Northern Virginia

The Arc of Northern Virginia Personal Support Trust is for people in Maryland, Virginia and Washington, D.C.

We manage all of the special needs trusts. We are experts in finance and disability policy. We know, care for and understand people with disabilities. Serving the community is our mission. That makes us the ideal partner to set up and manage your trust.

What is a Special Needs Trust?

A special needs trust is a reliable way to set aside money for the future of someone with a disability.

It’s like other trusts in many ways. Money may be put in a trust for a beneficiary, someone who needs help managing money.  Part of setting up a trust is choosing a trustee. That's the person who controls and manages the money for the beneficiary.

Trusts may have a manager to help with day-to-day tasks on behalf of the beneficiary. In The Arc of Northern Virginia's special needs trust program, The Arc is the manager. We help with day-to-day tasks on behalf of the beneficiary.

Government benefits are based on a person's income, savings and other assets they control. Money in a special needs trust is not controlled by the person with a disability. As a result, money in a special needs trust doesn't affect government benefits.

However, government agencies limit how money from a trust can be used. Many special needs trusts are set up with rules about what the money can be used for. And only a certain amount of money can be drawn from the trust at a time.

If a special needs trust is managed well, it's a great way to save for the future and protect government benefits.

Our staff is ready to help you understand, plan and create the special needs trust that's right for you. The best way to start is by getting in touch with Tia Marsili, our Director of Trusts. If you have any questions, please send her an email.

Who's Who in a Trust?

Beneficiary: The person who the trust is set up to help. With a special needs trust, it is someone with a disability.
Primary Representative: The person chosen to work with the beneficiary to help manage trust money. The primary representative (PR, for short) fills out and submits spending requests.
Manager: The person who works with the beneficiary, family and friends. Staff of The Arc of Northern Virginia manage the trusts. We also work with professionals such as lawyers, financial planners, and doctors.
Grantor: The person or people who create the trust. It can be family members or friends. In some cases, it might be the person with a disability.
Trustee: The person in control of  the beneficiary's money. Key Private Bank is the trustee for our trust.

How Can I Use a Special Needs Trust?

A special needs trust can be used to buy things that make the beneficiary's life better.

It can be used for clothing and luggage. It can be used for vacations and vehicles. It's for education, medical needs, entertainment, subscriptions, sports, health clubs and more.

But government rules restrict what special needs trust money can be used for. The money cannot be used for rent, utilities, groceries, garbage and recycling services, for example.

The money in a special needs trust is meant to supplement benefits and add enjoyment to the beneficiary's life.

The Arc of Northern Virginia works with families and individuals to comply with government rules. Our staff also minds the budget and other circumstances of each client.

We work as a team to make sure each beneficiary gets the right amount of help from trust funds while safeguarding benefits.

Learn more about how the payment request process works on our "How To Use Your Special Needs Trust" page. For more information about trusts and what's allowed, please get in touch with our Director of Trusts, Tia Marsili. You can send her an email.

Money from a special needs trust may be spent on these kinds of things:

  • Clothing, furniture, TVs, electronics
  • Sports, movies, clubs, subscriptions
  • Vacations and travel costs
  • Tuition, books, conferences
  • Eyeglasses and contacts
  • Dental care, hair care
  • Respite care, taxes, legal fees
  • Buying and maintaining a car or truck
  • Plus more.

Money from a trust cannot be used for these things:

  • Groceries or dining out
  • Rent payments
  • Electricity or heating bills
  • Water and sewer bills
  • Garbage, recycling and trash service

It was very overwhelming to me to realize that all of a sudden I had to learn about Medicaid, Social Security…  Special needs trusts… who had even heard of that?

Ruth, sister of a trust beneficiary

Choose the Right Special Needs Trust for You and Your Family

The Arc of Northern Virginia offers two kinds of special-needs trusts. Family-funded trusts and self-funded trusts both work in the same ways. The one that's right for you depends on your circumstances.

How a Family-Funded Trust Works
A family-funded trust is set up with money from a family to help a person with a disability.

Parents, grandparents, brother and sisters or anyone else in a family can add money to the trust. Many families set up a trust early on and add to it regularly. They may invite family members and friends to contribute money as gifts. Other families set up the trust to be funded when one or both parents die.

Once the family-funded trust is set up, all family members should be told about it. Friends and family may want to give money through wills or life insurance. It’s important to steer that money to the trust.

How a Self-Funded Trust Works
A self-funded trust is set up with money from a person with disability to help himself or herself.

Self-funded trusts are often set up when an unexpected sum of money is given to a person with a disability. The money could come from a poorly planned inheritance, a court settlement or alimony. The money could come from other places, too, such as Social Security benefits, adult child support or work income.

Sometimes a Family Needs Both Kinds of Trusts
Usually, one or the other is all that is needed. But in some cases, both kinds may be needed to help the same person.

If someone with a self-funded trust will also get money from his or her family, both kinds of trusts need to be set up. Family money should not be added to a self-funded trust. The reverse is also true.

Please get in touch with our trust team to find out which trust is best for you.

Getting a big sum of money at once or having a high income can affect the level of government benefits. Putting the money into a special-needs trust helps preserve government benefits.

Our Special Needs Trust program is a mix of solutions and empathy. In this video, learn the basics. Hear from people whose lives changed after working with us.

Self-Funded Trusts and Military Survivor Benefits Plans

The federal government allows military members and retirees to steer survivor benefit plans to their children with disabilities. Survivor benefits are paid to family members of someone in the U.S. military after they die.
A self-funded trust is needed to ensure the money doesn't put other government benefits at risk. There are several steps to setting this up. Our trust team will get you started.
Email AShelby@thearcofnova.org to set up a free consultation with our Director of Trusts.

It’s the reliability, it’s the validity, it’s the loyalty they have. It’s the understanding of all individuals with disabilities. It’s the dignity that they want to provide for people later in life.

Linda, mother of a trust beneficiary

Get In Touch. We Can Help.

Photo of Tia Marsili

Tia Marsili
Director of Trusts

TMarsili@thearcofnova.org

703-208-1119, Ext 115

Tia oversees the Trust department and will be your first point of contact for new trusts.

She works with families, individuals, agencies, and attorneys throughout Virginia, Maryland, and Washington, DC. She specializes in educating the community, various organizations, and agencies about comprehensive Futures Planning and Special Needs Trust (SNT) services.

Tia is a professional with over 23 years of experience in the world of disabilities. She's the mother of two daughters with disabilities. She works one-to-one with families and individuals to plan futures and establish SNTs.

Born in the USA and educated in Denmark, China, and Germany, Tia is a graduate of The University of Copenhagen with a degree in Sinology. She is multi-lingual, well-traveled, and has a passion for creating systems that provide equality.

Photo of Tia Marsili

Evelyn Gu
Assistant Director

EGu@thearcofnova.org

703-208-1119,  Ext 103

Evelyn maintains the systems and documents supporting the SNT program. She offers Trust clients daily on-site and over-the-phone support by providing personal contact with families and individuals, troubleshooting Trust account issues, and processing Trust checks and documentation.

With a background in psychology and business operations from the University of Virginia, Evelyn has worked to support efficient, high-quality service delivery for various clients.

She enjoys helping individuals and families receive the necessary information and tools they need to plan for the best possible future outcomes.

Photo of Trinitas Nsabimana with a white background

Trinitas Nsabimana
Account Manager

TNsabimana@thearcofnova.org

703-208-1119, Ext 119

Trini is your point of contact for special needs trust spending requests.

She provides on-site and phone support to clients every day. She works closely with our clients to ensure they have timely and effective access to funds. That helps clients pay for the services they need, such as medical, dental, and vision care, vacations, clothing, furniture, and utility bills.

Trini holds a Master's Degree in Business Administration from the University of District of Columbia and has extensive experience working with a variety of clients in different sectors.

Caroline Girgenti
Advocate

CGirgenti@thearcofnova.org

703-208-1119, Ext 120

When caring for someone with a disability, you sometimes need extra help. Our professional personal advocate, Caroline Girgenti, can help in dozens of ways.

We charge an hourly rate for advocate services. Our personal advocate program is for anyone who needs the extra help in navigating disability services.

Caroline meets and works with beneficiaries and families. She helps sort through issues and goals to see what services are needed. Services range from big tasks, like finding a job, to smaller ones, like filling out forms and applications.

Caroline is an experienced Program Manager who has worked in the mental health and intellectual disabilities fields. She's skilled in nonprofit, program, and project management; as well as leadership, policy analysis, and program development. Caroline earned her undergraduate degree from James Madison University, and holds an Masters degree from George Mason University.