Special Needs Trusts

Protect Your Child's Financial Future

Leave money to a loved one with a disability — without losing benefits

Special Needs Trusts shows you how to provide for a loved one with a disability—without jeopardizing government benefits.  It gives you all of the information and forms you need to either create a special needs trust yourself or to boost your knowledge and confidence while working with a lawyer.

With Special Needs Trusts you get a:

  • plain-English understanding of special needs trusts
  • special needs trust form, with clear instructions
  • chapter on pooled trusts
  • sample letter to the trustee
  • and more.

Note: This book explains third-party special needs trusts — that is, trusts you set up for someone else.  You cannot make a special needs trust for yourself with this title.

See below for a full product description.

  • Product Details
  • Use a special needs trust to provide financial security for your child (or anyone) with a disability, without jeopardizing important government benefits. Funds in a special needs trust, when used correctly, do not count against eligibility for benefits and can be spent to improve the quality of your child’s life.

    This book provides everything you need to know about special needs trusts—whether you make one yourself with this book or have an attorney draft one for you. The authors explain:

    • how special needs trusts work
    • the trustee’s role
    • ways to pass important information to successor trustees, and
    • the pros and cons of joining a pooled trust.

    “‘What will happen to our son or daughter when we are no longer here?’ Special Needs Trusts provides parents with an answer.”—Roslyn Brilliant, Former Executive Director, Disabled and Alone/Life Services for the Handicapped, Inc.

    “When it comes to self-help legal stuff, nobody does a better job than Nolo.”—USA Today


    Number of Pages
    Included Forms
    • Special Needs Trust
    • Sample Letter of Intent
    • Letter to Trustee
    • Florida Witness Statement
    • Questions to Ask a Potential Professional Trustee
  • About the Author
    • Kevin Urbatsch

      Kevin Urbatsch is a principal of the special needs and settlement planning firm, The Urbatsch Law Firm P.C. in Walnut Creek, California. He is a nationally recognized expert in the unique planning needs of individuals with disabilities and their families. Mr. Urbatsch is a charter member of the national organization, the Academy of Special Needs Planners. He writes and is a frequent lecturer both locally and nationally on planning for persons with disabilities, primarily concerning special needs trust drafting and administration.

  • Table of Contents
  • 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’ 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



    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


  • Sample Chapter
  • 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 Supplemental 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, the maximum amount that a person with a disability may earn each month while maintaining eligibility for benefits. In 2023, the SGA figure is $1,470 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 age 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

    Alzheimer’s disease
    bipolar disorder
    cancer (many types)
    congenital heart disease
    diabetes mellitus (Type 2)
    fetal alcohol syndrome
    fragile X syndrome

    Huntington’s chorea
    kidney malfunction
    multiple chemical sensitivity
    multiple sclerosis
    muscular dystrophy
    obsessive-compulsive disorder

    organic brain syndrome (OBS)
    Parkinson’s disease
    phenylketonuria (PKU)
    severe autistic disorder
     sickle cell anemia
    spina bifida
    Tay-Sachs disease
    traumatic spine damage
    Turner’s syndrome

    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 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 might be amenable to treatment in 10 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 considers 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 10 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 workforce? 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.

    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
      Who Qualifies Benefits
    SSI People with limited income and few resources; if a noncitizen, must meet certain criteria Monthly cash payments (amount depends on living arrangement, marital status, and disability)

    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)

    Most medical services, including long-term nursing home care and pharmaceuticals
    SSDI & Social Security

    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

    Monthly cash payments
    Medicare People who are eligible for Social Security disability benefits because of their work history or that of an eligible parent Most medical services, but not long-term care

    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 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 the beneficiary’s 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 are 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 the laws that govern how trustees must manage assets (described in Chapter 2) won’t apply to the person who has control of the money, so, 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 that person’s 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 the 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, sometimes referred to as the “Shared Responsibility Payment.” 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. However, some states still enforce tax penalties. As of March 2023, those states include Massachusetts, New Jersey, Rhode Island, and California, as well as Washington, D.C.

    The Trump administration also attempted to return 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 go to school. However, few states implemented these work and school requirements due to legal challenges, state withdrawals, and the COVID-19 pandemic. As a result, the Biden administration withdrew all approved work and school requirements by the end of 2021.

    Despite the many challenges to the ACA, it 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 2023, the income limit for a single person to qualify for a subsidy is $58,320, except for Alaska, where it is $72,840, and Hawaii, where it is $67,080.)

    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 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 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 ($20,120 in 2023). 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

    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.

    Nine 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.”

    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.

    Using your work record to establish eligibility for your disabled child. If your child is disabled before age 22, your child 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.

    Medicaid and SSI Eligibility: State Differences
    Eligibility for SSI and Medicaid determined separately (“209(b) states”) Medicaid for all SSI recipients, but must separately apply to Medicaid agency (“SSI Criteria states”) Eligibility for SSI same as eligibility for Medicaid (“1634 states”)


    New Hampshire
    North Dakota


    The Commonwealth of the Northern Mariana Islands

    All other states and the District of Columbia

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

    We hope you enjoyed this sample chapter. The complete book is available for sale here at Nolo.com.


35 Reviews
5 Star
4 Star
3 Star
2 Star
1 Star

Great resource guide for the novice or professional

By Barbara S.

I went looking on the internet for a resource for information on special needs trusts following the termination of my relationship with a supposed legal expert in the field. I only wish I would have found this guide before I wasted many hours and thousands of dollars with a not very knowledgeable attorney. But I think the guide will benefit me greatly as I move forward in my new role as trustee of my brother’s special needs trust. Thanks for making it available to the public.

Posted on 9/12/2023

Great resourse

By Anonymous

The book is helpful and easy to understand. However I am unable to download any forms promised in back of the book appendix. That disappointed me a bit!

Posted on 9/12/2023

Plan your ahead before visit to attorney!

By Anonymous

Very helpful in planning before my visit to special needs trust attorney and provides reference manual to trustees.

Posted on 9/12/2023

A Helpful Book

By Anonymous

A very helpful book!

Posted on 9/12/2023

Great resource!

By Donna W.

Great resource to help with preparation of a special needs trust.

Posted on 9/12/2023


By John A.

The SNT soft cover reference book is a handy book to have on your credenza. It has been updated often. It is not a substitute for a larger service, but can give its reader an idea what the issue/concerns are that could prompt the need for more questions to ask or what other areas need to be researched.

Posted on 9/12/2023


By Don H.

I had a client who needed a special needs trust. I had drafted many trusts but never a special needs trust. I read the book and used the included editable special needs trust. I also added some language that was needed for this particular client's situation. I downloaded the editable version of this book. I give it 5 stars as it is an excellent resource.

Posted on 9/12/2023

Easy to understand and use

By Opal F.

This book was very helpful. It helped us understand what we needed to do to get our SNT established, as well as preventing us from being sabotaged by the well intentioned mistakes of others.

Posted on 9/12/2023

Extraordinary Guidance

By D Clay P.

Outstanding guidance in a critical area. Excellent for those who need a 'Special Needs Trust" and for those who serve those who need a "Special Needs Trust'. Peace.

Posted on 9/12/2023


By Herman B.

excellent guide

Posted on 9/12/2023

Good enough for what it does cover but not what I needed.

By Allan H.

Good enough info for some but not what I needed to know about which was a trust for allowing transfer of assets from one spouse to another in order to qualify for Medicaid if one spouse had a need for it.

Posted on 9/12/2023

Great Resource!!!

By Daniel G.

Found it extremely helpful and will use it as our guide in developing a special needs trust. It is easily written, examples are kept simple, and therefore, one is able to absorb its contents. The links to outside sources for various subjects are a definite benefit.

Posted on 9/12/2023

Essential reference for any Special Needs Trust Trustee

By Joyce D.

Gave me the exact, detailed advice I needed as a Trustee for my brother's Special Needs Trust. Invaluable instructions and information every trustee should know. Even the lawyer who set up the trust was not as informative, nor were the CPA or other Trust lawyers I have consulted. A must-have if you are involved with Special Needs Trusts and don't want to have to pay lawyer's fees to manage a trust correctly.

Posted on 9/12/2023


By Robert F.

Excellent informative resource

Posted on 9/12/2023

This is Outstanding!

By Douglas K.

I purchased the Special Needs Trusts book with the downloadable version and PDF forms. It was worth every penny. The book is crystal clear and easy to read and follow. The downloadable version makes it possible to immediately search on any word you have questions about and find it in the book. And the downloadable forms are pre-loaded with fillable blank spots showing you where to enter the material you need to supply along with suggestions and samples. I was able to create a perfectly fine and legal trust valid in my state in one day after spending a couple more days gathering the information required and thinking about what I wanted to say. This is worth its weight in gold. I recommend it unconditionally.

Posted on 9/12/2023

A great reference to start the conversation!

By Nora M.

I have been trying to think of ways to help my grand child as an adult without interfering with help that may be need or intittled to through government assistance. This book has help me understand what can and cannot be done legally. It has been a tremendous help. Every question that I had about the trust was answered in the book. An excellent source of information.

Posted on 9/12/2023

Excellent Resource

By Neil M.

Recommended by my Attorney, this was an invaluable aid in understanding what is an SNT

Posted on 9/12/2023



This book is well written and up to date. It contained valuable information that helped me make decisions and provide for my dependents. Nolo is a resource I value and trust.

Posted on 9/12/2023

Invaluable Resource for Learning about Special Needs Trusts

By Solo Practicing Lawyer

This book is a great resource for lawyers and non-lawyers alike who want to know about Special Needs Trust in general and third-party Special Needs Trusts in particular. I found the book to be well-organized and easy to understand. The sample forms are excellent and the suggested resources for additional learning are quite valuable. Every lawyer should have a copy of this in his or her library. Thanks to the authors for a job well-done!

Posted on 9/12/2023

A Good Resource for lawyers and clients. Thanks!

By Robert F.

Very Helpful Book. The author obviously knows the subject and cares about being helpful, i bought the book and the e-book as well.

Posted on 9/12/2023


By John D.

Easy to use

Posted on 9/12/2023



Very Helpful.

Posted on 9/12/2023

A Great Source of Information

By Charles C.

The book is easy to read and a great source of easy to understand information. I highly recommend this book for anybody considering care for a love one with special needs.

Posted on 9/12/2023

Answered all my questions!

By Todd M.

The books is easy to read and gets to the point answering all my questions, then some.

Posted on 9/12/2023

Products are great

By Johanna G.

I have loved every purchase I have made with Nolo I have saved myself and my family a lot of money using the Nolo products. I’m grateful for the opportunity to have more then one way to get a trust done. Lawyers can be very expensive.

Posted on 9/12/2023

Great resource

By Robert C.

They cover every aspect of the Special Needs Trust. And the best part is they do so in a very plain speaking tone. With this resource you will feel very confident in what you are doing in no time.

Posted on 9/12/2023

Helpful resource

By Susan H.

This book was very helpful to me as I wrote a special needs trust for my niece. The background info helps to make decisions and set the stage. The template with step by step directions takes you the next part of the way and then the follow up information helps you close the process.

Posted on 9/12/2023

Well put together.

By Anthony S.

It is a simple, easy-to-use guide that prevents noncompliance.

Posted on 9/12/2023

Good information

By Barbara P.

Good information here..
Looking forward to update with considerations in the COVID environment.

Posted on 9/12/2023

Just What I Needed

By Roberta L.

As always, Nolo has provided a quality product at a reasonable price. This volume is just what I needed to incorporate into my forms.

Posted on 9/12/2023

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