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, 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 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 “substantial gainful activity?” SGA is a dollar amount, a maximum amount that a person with a disability may earn each month while maintaining eligibility for benefits. In 2019, the SGA figure is $1,220 per month ($2,040 if blind). 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, it 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.
| Conditions That Can Cause Permanent Disability: A Partial List |
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agoraphobia
Alzheimer’s disease
amputations
bipolar disorder
cancer (many types)
congenital heart disease
diabetes mellitus (Type 2)
emphysema
fetal alcohol syndrome
fragile X syndrome
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hemophilia
HIV
Huntington’s chorea
kidney malfunction
leukemia
lupus
multiple chemical sensitivity
multiple sclerosis
muscular dystrophy
obsessive-compulsive disorder
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organic brain syndrome (OBS)
Parkinson’s disease
phenylketonuria (PKU)
severe autistic disorder
sickle cell anemia
spina bifida
Tay-Sachs disease
thalassemia
traumatic spine damage
Turner’s syndrome
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Someone Who May 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 may 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 neurotransmitters (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 may be amenable to treatment in ten or 20 years. Similarly, techniques to regenerate damaged or severed nerve cells may 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 conditions engage in productive activity.
Technological advances. Profound changes in technology have ameliorated some physically disabling conditions. For example, hearing aids or surgery largely eliminates the disability of deafness for many Americans. More change is on the way in fields such as robotics and nanotechnology. For example, 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 may not always be eligible for SSI and Medicaid, either because disabilities are defined differently or because he or she enjoys 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, may 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.
Someone Who May 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 may not need help now, as the condition progresses, they may need to receive financial assistance from SSI or Medicaid.
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 either help 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) may 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 may 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 may 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 eligible for Medicare. However, if you don’t expect Peter to need long-term nursing care, you may 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.
| Sources of Support and Medical Care for People With Disabilities |
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Who Qualifies
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Benefits
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SSI
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People with limited income and few resources; if a noncitizen, must meet certain criteria
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Monthly cash payments (amount depends on living arrangement, marital status, and disability)
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Medicaid
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People who qualify for SSI
People who have too much income for SSI but might still independently qualify
People who qualify by Medicaid waiver
People who are in a state that has enacted “expanded” Medicaid and have income below 138% of the federal poverty level (FPL)
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Most medical services, including long-term nursing home care and pharmaceuticals
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SSDI & Social Security
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People who have paid enough Social Security taxes, without regard to resources or income
People who become disabled before age 22, if their parents qualify for either SSDI or Social Security retirement benefits
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Monthly cash payments
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Medicare
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People who are eligible for Social Security disability benefits because of their work history or that of an eligible parent
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Most medical services, but not long-term care
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For more information, see www.ssa.gov.
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Someone Who Needs Assistance Managing an Inheritance
Even if a person is never eligible for SSI or Medicaid, it may still make sense to place that person’s inheritance into a special needs trust. This is particularly true for people who are unfamiliar with or incapable of managing money in a prudent fashion. 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 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 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 may 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. For example, 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 he or she 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 may have devastating results if that person lacks the capacity to manage money. The only time it may 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 may be able 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. 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 ACA mandates that all persons in the United States have health care insurance. For people with limited incomes—like many people with disabilities—the ACA provides 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 2019, the income limit for a single person to qualify for a subsidy is about $48,560.)
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 ($16,753 in 2019). 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.
| Medicaid Eligibility Rules |
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Within limits set by federal law, each state can determine who is eligible for its Medicaid program. In most states, someone who is eligible for SSI is also automatically eligible for Medicaid.
Ten states, however, determine eligibility for Medicaid separately from eligibility for SSI. In these states, the income and resource limits for Medicaid are either roughly the same as for SSI or somewhat lower. So someone could be eligible for SSI but not for Medicaid. These states are listed below. They’re called “209(b) states” after a section of the Social Security Act that allows states to determine Medicaid eligibility separately.
This book assumes that someone who is ineligible for SSI because of excess income or resources is also ineligible for Medicaid. However, in most states, a person with excess income or resources can become eligible for Medicaid by spending down the resources or excess income. And a person with disabilities who does not qualify for SSI could still qualify for Medicaid by being determined to be “medically needy.”
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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.
| Medicaid and SSI Eligibility: State Differences |
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Eligibility for SSI and Medicaid determined separately (“209(b) states”)
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Medicaid for all SSI recipients, but must separately apply to Medicaid agency (“SSI Criteria states”)
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Eligibility for SSI same as eligibility for Medicaid (“1634 states”)
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Connecticut
Hawaii
Illinois
Minnesota
Missouri
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New Hampshire
North Dakota
Oklahoma
Virginia
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Alaska
Idaho
Kansas
Nebraska
Nevada
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Oregon
Utah
The Common- wealth of the Northern Mariana Islands
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All other states and the District of Columbia
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For more information about Medicaid eligibility requirements in a 209(b) state, contact that state’s Medicaid agency.
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TIP
Using your work record to establish eligibility for your disabled 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.
