Your Legal Companion for Special Needs Trusts

1. People Who Can Benefit From a Special Needs Trust

• People With a Permanent or Severe Disability Who Are Unable to Earn a Living
• Someone Who Might Get Better
• Someone Who Might Need a Special Needs Trust Later
• Someone Who Is Eligible for Medicare or SSDI
• Someone Who Needs Assistance Managing an Inheritance
• Alternatives to a Special Needs Trust

2. How Trustees Can (and Cannot) Use Trust Funds

• SSI Income and Resource Limits: An Overview
• Assets in the Special Needs Trust
• How Trustees Use Special Needs Trust Funds
• Exempt Resources
• Gifts of Cash
• Payments for Food or Shelter
• Valuing Gifts of Food or Shelter From Other Sources

3. Getting Money Into a Special Needs Trust

• Who Can Set Up a Special Needs Trust
• Tell Family and Friends About the Trust
• Assets You Can Put in a Special Needs Trust
• How Much Money Will Your Loved One Need?
• How to Leave Money After You Die to a Special Needs Trust
• Try to Head Off Mixing the Beneficiary’s Property With Trust Property

4. The Trustee’s Job

• The Trustee’s Basic Duties
• Working With a Guardian or Conservator
• Investing Trust Property
• Spending Trust Money for the Beneficiary
• Managing a Remainder Beneficiary’s Property
• Preserving Eligibility for SSI and Medicaid
• Paying Taxes
• Going to Court
• Letter to Trustee

5. Choosing Trustees

• An Overview of Your Options
• Picking the Ideal Trustee
• Naming the Initial Trustee
• Naming Successor Trustees
• Naming Cotrustees
• Naming a Professional or Corporate Trustee
• Using a Trust Protector or Trust Advisory Committee
• Signing Up for a Pooled Trust

6. Joining a Pooled Trust

• An Overview of Pooled Trusts
• Anticipating Your Use of a Pooled Trust
• Can You Use a Pooled Trust?
• How Pooled Trusts Work
• Joining a Pooled Trust
• What Happens When the Trust Ends

7. ABLE Accounts

• Qualifying for and Opening an ABLE Account
• Funding an ABLE Account
• Spending ABLE Account Funds
• Debit or Prepaid Cards
• Medicaid Payback
• Is an ABLE Account Right for You or Your Loved One?

8. Creating Your Special Needs Trust

• Drafting the Trust Document
• Making the Trust Legal and Effective
• Keeping the Special Needs Trust Up to Date
• Sample Special Needs Trust

9. Finalizing and Funding Your Special Needs Trust

• Making Your Trust Legal
• Taxes
• Opening the Trust’s Deposit Account
• Incorporating the Trust Into Your Estate Plan

10. Preparing a Letter of Intent

• How a Letter of Intent Helps
• Before You Write Your Letter
• What to Include in Your Letter
• After You Write Your Letter

11. Where to Get More Help

• Lawyers
• Paralegals
• Certified Financial Planners
• SSA and Medicaid Personnel
• Keeping Up to Date
• Books

Glossary

Appendixes

A. Letter to Trustee

• Letter to Trustee
• Managing a Special Needs Trust
• Documenting the Authority of Successor Trustees

B. Sample Letter of Intent

• Sample Letter of Intent
• Certificate of Trust

C. Using the eForms

• Using the RTFs
• List of Forms

Index

Chapter 1:
People Who Can Benefit From a Special Needs Trust

Special needs trusts enhance the quality of life for people with a disability, by maximizing the resources available to them. It preserves their eligibility for Supplementary Security Income (SSI) and Medicaid (which together pay for food, shelter, and medical care, but little else). The special needs trust can pay for additional things that make life better.

The following sections explain in detail which groups of people will benefit from a special needs trust. If you’re unfamiliar with how Medicare and Medicaid work, or need a refresher, take a look at our brief summary of these programs, which includes the Affordable Care Act (Obamacare), at the end of this chapter.

People With a Permanent or Severe Disability Who Are Unable to Earn a Living

Special needs trusts are most commonly used for people who have permanent or severe disabling conditions. These people likely will qualify for government assistance from the SSI and Medicaid programs their entire lives.

It’s important to understand that a person with a disability, as that term is commonly understood (in the context of fair housing and fair employment), won’t necessarily qualify for SSI or Medicaid. For purposes of these assistance programs, the government defines “disability” as the inability to do any “substantial gainful activity” (SGA) by reason of any medically determinable physical or mental impairment. This condition must be expected to result in death or has lasted or can be expected to last for a continuous period of not less than 12 months.

So, in order to qualify for SSI or Medicaid, the two qualifications are: The person has a disability that will last at least a year or is expected to result in death; and the person must be unable to engage in SGA.

But we aren’t done yet. How, exactly, does the government measure SGA? SGA is a dollar amount, a maximum amount that a person with a disability may earn each month while maintaining eligibility for benefits. In 2021, the SGA figure is $1,310 per month. The Social Security Administration reasons that an individual who is able to earn at least this amount per month is able to engage in competitive employment in the national economy. (Of course, this is contrary to what many people would view as a reasonable figure.)

Keep in mind that the Social Security Administration’s definition of “disability” for benefit purposes is not the same as you will encounter in other contexts. For example, the federal Fair Housing and Amendments Act forbids discrimination against tenants who have a disability, but the definition of disabled has nothing to do with the tenant’s earning capacity. (Instead, the fair housing act focuses on being substantially impaired with respect to major life activities, being regarded as such, or having a history of this condition.)

Only United States citizens automatically qualify for SSI benefits when they meet these qualifications. Noncitizens can qualify for SSI if they are legally in the country and meet some additional qualifications.

Low-income people 65 or older are also eligible for SSI (this group must meet asset and income requirements, but not the disability test). When someone under the age of 65 applies for SSI or Medicaid benefits, the Social Security Administration makes a determination as to whether the person is disabled. (Chapter 11 lists references to the rules and other sources of law regarding SSI and Medicaid rules that affect special needs trusts.)

People with blindness, developmental disabilities, Down syndrome, organic brain damage, chronic mental illness, physical paralysis (paraplegia), or congenital disabling afflictions, such as cerebral palsy or cystic fibrosis, have been the most common automatic beneficiaries of government benefits for persons with disabilities. But many other physical and mental conditions meet the Social Security Administration’s definition of a disability that is likely to last a lifetime. Some of them are listed below.

Someone Who Might Get Better

Many disabling conditions are not permanent. For example, many combat veterans suffer from posttraumatic stress disorder, which produces a combination of mental, emotional, and physical symptoms, making it impossible to work for years, but not necessarily for a lifetime. Even then, however, it might make a lot of sense to create a special needs trust because it’s impossible to tell just how long the disability will last.

How the Definition of “Disabled” Is Changing

Many factors make it hard to predict whether someone who currently has a disability will always need to rely on SSI and Medicaid.

Changes in the workplace. For SSI eligibility purposes, someone who can’t work is disabled. But, as the workplace changes, so does the definition of disabled. For instance, when most people worked on farms, someone with a developmental disorder might not have been considered disabled for the purposes of an SSI-type program, because formal learning wasn’t necessary to heft a pitchfork, milk cows, plant corn, or do housework.

In 21st-century high-tech America, however, a pronounced difficulty in learning makes it difficult to find a job. On the other hand, technological advances in the medical field have made it possible for people with paraplegia or severe visual impairment to perform a large range of productive work. People with disabilities who are able to work and earn a certain amount of money will not meet the SSA definition of “disabled.”

New treatments for old disabilities. Modern medical techniques and discoveries in areas such as gene therapy, stem cells, and neuro-transmitters (molecules that facilitate nerve impulse transmissions) offer the possibility of cures for a broad range of conditions that currently are incurable. Parkinson’s and Alzheimer’s disease are two devastating conditions that might be amenable to treatment in ten or 20 years.

Similarly, techniques to regenerate damaged or severed nerve cells might someday offer relief to people who cannot move their limbs because of a spinal injury. Mentally disabling conditions also are reaping the benefits of modern medical technology. The pharmaceutical industry has developed drugs that let people with a large range of formerly incapacitating mental and mood conditions, such as schizoaffective disorder or bipolar disorder, engage in productive activity.

Technological advances. Profound changes in technology have ameliorated some physically disabling conditions. For example, hearing aids or surgery largely eliminate the disability of deafness for many Americans. More change is on the way in fields such as robotics and nanotechnology. For instance, research is underway to help people whose arms or legs have been amputated to regain near-full functionality with the help of “intelligent” prostheses, and to develop a computerized interface that helps blind people experience visual feedback from the environment.

Planning With Recovery in Mind

The SSI and Medicaid programs have not, by and large, taken medical and technological advances into account when determining disability. A condition that prevented employment in 1950 is often assumed to do so today. However, this could change at any time. Your loved one might not always be eligible for SSI and Medicaid, either because disabilities are defined differently or because of a dramatic recovery.

There’s no way to know whether someone’s disability will improve with time, either naturally or through medical and technological intervention. But even so, you can create a special needs trust without worrying that you will needlessly tie up your loved one’s inheritance. The trust document takes into account the possibility that the trust, for whatever reason, might not always be necessary, and allows the trustee to terminate the trust.

EXAMPLE: Jeanne leaves $100,000 in her will to a special needs trust she created for the benefit of her daughter Cassie, who is ten and has been diagnosed with schizophrenia. Jeanne named Joanne, Cassie’s aunt, to take over as trustee when Jeanne dies. The trust gives the trustee complete discretion as to how the funds may be spent for Cassie’s benefit, provided that disbursements do not disqualify Cassie for SSI and Medicaid.

The trust document also states that if someday Cassie does not need or does not qualify for SSI or Medicaid, the person serving as trustee may terminate the trust and distribute the remaining trust money to Cassie outright.

Twenty years later, when Jeanne dies, the $100,000 passes to the trust. Cassie is now 30 years old and the Social Security Administration’s guidelines no longer consider her disabled for purposes of SSI and Medicaid. Joanne, the person serving as trustee, terminates the trust and distributes the property to Cassie outright.

If you are certain that a loved one with a disability is likely to get better, another option is to leave the funds to that person outright, with the expectation that the recipient will create a first-party special needs trust if needed. (A first-party special needs trust is one funded with the beneficiary’s own money—unlike the trust you make with this book, which is funded with your money or someone else’s.) Remember though, a first-party special needs trust is more expensive to set up than the special needs trust covered in this book, can only be set up for someone under the age of 65, must be for the “sole benefit” of the beneficiary, and requires payback to the state’s Medicaid agency on the termination of the trust (which results from the death of the beneficiary). You will need an attorney’s help to make sure that the trust complies with the Medicaid eligibility rules of your state.

Many people find the first-party special needs trust unattractive, because the Medicaid payback often exhausts the remaining funds in the trust upon termination of the trust, leaving nothing left over for other family members to inherit. Consult with an experienced estate planning attorney before deciding to forego a special needs trust now in anticipation of your loved one’s setting up a first-party trust when you pass away.

Someone Who Might Need a Special Needs Trust Later

A special needs trust may also be useful for people who have conditions that are likely to get worse. Although they might not need help now, as the condition progresses, they might need to receive financial assistance from SSI or Medicaid.

But how do we know that a person’s condition is likely to get worse? This issue often comes up in families with young children, who are beginning to show symptoms of a disability. In young children, it is difficult to know how the disability will develop over the years. Will the child be able to go to college? Will the child be able to join the work force? No magic ball can show us whether the child will grow into an adult so affected by a disability that the adult needs the added level of support that a special needs trust would provide.

In this situation, creating a special needs trust involves some guesswork. But if you think it’s more likely than not that a loved one will need help either managing finances or government assistance for a significant length of time, it makes sense to set up a special needs trust. There’s really no risk. The trust in this book includes a clause that allows the person serving as trustee to terminate the trust if changes in the beneficiary’s disability make a special needs trust unnecessary. If it turns out that the trust is needed, however, the trustee can use trust funds to pay for all kinds of useful things, such as tuition, travel, tools, cultural events, and companion services. (See Chapter 2 for a complete list.) And because the trustee has complete control over how funds are used, you don’t need to worry about the beneficiary’s spending it in ways that are not acceptable to you.

Someone Who Is Eligible for Medicare or SSDI

A loved one who receives Medicare or Social Security Disability Insurance (SSDI) might not need a special needs trust because these programs do not base eligibility on the amount of money or assets an applicant has. There’s no need to keep an inheritance in trust; your loved one can own it outright without losing SSDI or Medicare benefits.

If, however, the SSDI payment is low, SSI may be a valuable way to supplement your loved one’s income. In addition, Medicaid might be necessary to provide benefits not included in the Medicare program—for instance, long-term nursing home care or in-home care. In other words, someone can start off with only Medicare and SSDI, but progress to Medicaid and even SSI. Once that transition happens, it makes sense to consider a special needs trust to preserve these benefits and provide a source of added income.

Put another way, suppose your loved one, Peter, suffers from a degenerative mental illness that almost certainly will require long-term care in a nursing facility. Establishing a special needs trust might make sense even if he is, at the time, eligible only for Medicare. However, if you don’t expect Peter to need long-term nursing care, you might prefer to not tie up his inheritance in a special needs trust (assuming that you don’t have concerns about Peter’s ability to spend the inheritance wisely and you’re not worried about the possibility that he will become the victim of predators). Instead, you can leave the property directly to Peter, who can continue to receive Medicare and SSDI.

TIP
Medicaid goes by different names in different states. Medicaid is a combined federal and state program, and is known by a different name in some states. For example, in California it’s called Medi-Cal, and in Massachusetts, MassHealth.

For more information, see www.ssa.gov.

Someone Who Needs Assistance Managing an Inheritance

Even if a person is never eligible for SSI or Medicaid, it can still make sense to place that person’s inheritance in a special needs trust. This is particularly true for people who are unfamiliar with or incapable of prudently managing money. Even in the absence of an established disability, a special needs trust could be helpful for a person with mild developmental disabilities, mild autism, attention deficit disorder, or bipolar syndrome; or for someone who is easily influenced by financial predators.

In any of these circumstances, the special needs trust by its very nature would help, because the trust names a qualified person to help the beneficiary manage and spend trust assets. This helper is the trustee. The trust puts a host of rules in place to make sure that that the trustee manages the money in the best interests of the beneficiary. Such trusts are often called “spendthrift” trusts, when used to keep assets out of the hands of a beneficiary (and of his or her creditors) and in the firm control of a wise trustee. So, even for those persons who never need or use public benefits, a special needs trust can be used to optimally manage an inheritance.

Ultimately, only you can decide whether it makes sense to provide the long-term management of a loved one’s inheritance that a special needs trust provides, instead of leaving the inheritance directly to that person. If you decide to use a special needs trust, the beneficiary is sure to receive much the same benefit from the inheritance as would be the case with an outright gift, even though a small portion of the trust assets may be spent on administrative fees over the years.

Alternatives to a Special Needs Trust

Special needs trusts may not be the right solution for every family. Trusts can cost time and money to administer, and the person serving as trustee may be called on to make difficult decisions about investing and spending trust assets.

Leaving Money to a Friend or Relative

Rather than rely on a special needs trust, you might be inclined to leave some money to a friend or relative who agrees to watch out for your loved one’s needs after your death. With this plan, you would leave nothing to your loved one with disabilities.

Unfortunately, this informal approach has several serious downsides. The main problem is that because the person to whom you leave the property will own it outright, you can’t ensure that the money will end up benefiting your intended recipient, no matter how honorable everyone’s intentions at the outset. In addition, the money would be subject to the friend’s or relative’s creditors in a lawsuit or bankruptcy. If your loved one is still alive at the friend’s or relative’s death, the property could pass to that person’s heirs if the relative or friend fails to direct otherwise in a will or trust. Then again, it could go to a spouse in the event of a divorce. The biggest problem is that because the laws that govern how trustees must manage assets (described in Chapter 5) won’t apply to the person who has control of the money, if that person spends the money on a new car instead of on your loved one’s needs, there is nothing that anyone will be able to do about it.

This method is usually a big mistake because it leaves the person who needs the most protection reliant on the continued goodwill of others—with no recourse if your wishes are not honored.

Leaving Money Directly to Your Loved One

Leaving money directly to a person with a disability will almost certainly eliminate his or her eligibility for SSI and Medicaid. It also can have devastating results if that person lacks the capacity to manage money or is susceptible to financial predators. The only time it might be better to leave property directly to someone with a disability is if that person is unlikely to ever qualify for SSI and Medicaid and has the ability to manage the funds.

Using a Pooled Trust

If you don’t want to set up your own special needs trust, you might wish to join an existing “pooled trust.” Almost every state has at least one nonprofit organization that operates this type of trust. In a pooled trust, gifts to many disabled beneficiaries are combined so that they can be efficiently and professionally managed and have better investment options. The trustee invests and spends funds for the beneficiaries without affecting their eligibility for SSI and Medicaid. If you sign up for one of these pooled trusts, you can leave the trust details to them.

One of the benefits of pooled trusts is that the administrative fees, like trustee fees, are generally much lower than the costs of maintaining a special needs trust that has been drafted or customized for a specific individual. The downside of a pooled trust is that the beneficiary will receive less attention from his or her trustee. Because the pooled trust is managing hundreds, if not thousands, of beneficiary subaccounts, their approach to administration is less hands-on than that of a trustee managing a customized third-party special needs trust for one individual. The trustee of a pooled trust acts more like a specialized bill payer. However, as mentioned above, the investment options are sometimes better, and the management of the trust is still professional in nature.

Pooled trusts can prove convenient when you are concerned about whether there will be enough funds at the time of your death to absorb the administrative cost of a third-party special needs trust. If you are unsure about committing to a pooled trust at the outset due to the administrative cost of an individual special needs trust, you can take a more middle-ground approach: You can provide in your estate plan that your loved one’s inheritance will go to a pooled trust if it is below a certain dollar amount, or to a third-party special needs trust if it is over that amount. Consult an attorney about the wisdom of this approach, and for help in adding this trigger to your estate plan. Chapter 6 discusses pooled trusts in detail.

Private Health Care and the Affordable Care Act (ACA)

Until recently, Americans’ access to health care was typically tied to employment. This created a challenge for people with disabilities, because their disabilities often kept them from being able to work. Even if they could afford the cost of individual (nongroup) health care premiums, insurance companies would refuse to provide individual coverage because of their preexisting conditions.

Under the ACA (also known as Obamacare), many of the barriers to private health care for persons with disabilities have disappeared. The biggest change is that a preexisting condition no longer denies an individual access to private health care. The ACA also makes private health care more attractive because it removes the lifetime limits on health insurance that made private plans unattractive to many persons with profound disabilities. Another benefit of the ACA is that it requires private health care coverage for children (to age 26) on a parent’s plan, even if that child has moved away from home, has a disability, is going to school, or is married. The ACA also caps the amount of money that a person will have to pay out of pocket each year on premiums and deductibles.

The Trump administration made some changes to the ACA. The most notable concerned the original mandate that all persons in the United States have health care insurance; failure to procure insurance could result in a tax penalty. The Trump administration reduced the tax penalty to $0, essentially removing the tax altogether. Without the negative consequence that would result from not obtaining insurance, the insurance mandate was effectively nullified.

The Trump administration also returned to the practice of linking healthcare to employment when it modified the ACA to give states the option, with approval by the federal government, to require Medicaid recipients to provide documentation that they either go to work or school. As of February 2021, 19 states have requested this link from the federal government. Some have been approved, though only two states have implemented it.

Despite the many challenges to it over the last administration, the ACA remains mostly in place. It provides people with limited incomes—like many people with disabilities—ways to pay premiums at a reduced cost.

The ACA makes these subsidies available to individuals who earn up to 400% of the Federal Poverty Limit (FPL). (For 2021, the income limit for a single person to qualify for a subsidy is about $51,040.)

In many states, you can search for and compare health care plans on the state’s health care website (called an exchange). If your state doesn’t have an exchange, use the federal government’s website at www.healthcare.gov.

Medicare

Medicare is a government-run health care system. It pays for most medical services (but very limited long-term care and very limited

in-home care) required by people with disabilities who are eligible for Social Security or Social Security Disability Insurance (SSDI) benefits. Medicare is like health insurance—it is designed to get you well, but not take care of you if you cannot take care of yourself. For example, it will not pay for somebody to assist you in activities of daily living, such as bathing, toileting, dressing, transferring from bed to chair, or feeding. A person need not be poor to get Medicare benefits, but because eligibility for Medicare is based on wage contributions, many people with disabilities fail to qualify for coverage.

Medicaid

Medicaid is a state-managed program that pays for virtually all health care delivered to people who don’t have private insurance and who don’t qualify for Medicare. Some programs, such as sheltered workshops, mental health supports, and independent living supports, are available only under the Medicaid program. (Some states give Medicaid a different name—for example, Medi-Cal in California and MassHealth in Massachusetts.)

Before the ACA, to get Medicaid you had to be classified as either “disabled” or older than age 64, and you had to have been poor enough to qualify for SSI, which provides income support for people with limited income and resources below $2,000.

The ACA expands Medicaid to cover persons with disabilities who have incomes up to 138% of the FPL ($17,609 in 2021). People with a disability can have more than $2,000 in resources and still qualify for Medicaid, if their income is below 138% of the FPL. This expanded program does not apply to persons currently receiving Medicaid, those over age 65, those applying for long-term nursing home care, and some others.

However, not every state has agreed to participate in the Medicaid expansion program. To learn whether your state has agreed to it, visit www.healthcare.gov/medicaid-chip/medicaid-expansion-and-you. This website also explains the options for your loved one with special needs who resides in a state that refuses to expand Medicaid eligibility.

For the many people with disabilities who don’t qualify for Medicaid, health care costs cause serious financial complications. For example, if parents leave money directly to an adult child with a disability, the gift will disqualify the child from SSI and from Medicaid until the money is used up. This is where the special needs trust comes in. It allows people with special needs to enhance their quality of life with money and assets received from others without losing SSI and Medicaid.

For more information about Medicaid eligibility requirements in a 209(b) state, contact that state’s Medicaid agency.

TIP
Using your work record to establish eligibility for your child. If your child is disabled before age 22, he or she may qualify for SSDI and eventually Medicare based on your work record. Inform the Social Security Administration of the child’s condition now, so that when the working parent becomes disabled, retires, or dies, the child with disabilities may qualify for SSDI and Medicare. This often is a better result for a child compared to relying solely on SSI and Medicaid because benefits are typically better and are easier to manage.
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