Paul O. Dillon, Attorney at Law

Can You Support a Child with Special Needs?

Families that include individuals with special needs require planning to secure their loved ones' security in the future, both in legal and financial terms. There’s usually no expectation of the child becoming an independent adult, so careful planning is needed, as advised in the recent article “Financial Planning for Families with Disabilities” from Wealth Management.

Many families neglect planning for their retirement, focusing all their resources on developing a plan for their disabled child. However, retirement and their child’s future need to be secured, which is where an estate planning attorney can help.

In 2014, Congress created The Achieving a Better Life Experience (ABLE) accounts to allow disabled individuals to own accounts with up to $100,000 without the assets being counted against their eligibility for Supplemental Security Income. A parent may make annual contributions, and costs not covered by government benefits can be paid using this account.

A Pooled Special Needs Trust is a group of several Special Needs Trusts managed by a nonprofit, which, as its name implies, pools the assets of many Special Needs individuals together. Each account remains separate, and the trust provides management and investment services.

Unlike a typical SNT, people over 65 may participate in a pooled SNT. Medicaid and SSI beneficiaries wishing to spend down their assets to become eligible can transfer assets directly into a pooled trust account. Consult with an estate planning attorney to ensure that this occurs correctly.

The most significant responsibility for parents planning for their disabled child is to ensure that no one mistakenly puts their child’s eligibility at risk for Medicaid and SSI. A well-meaning family member leaving assets to the child could undo plans, so they must be informed of the necessary restrictions.

Medicaid does far more than provide health care benefits. It funds social and occupational programming, residences for group living and many other benefits of great value to the disabled individual. The eligibility rules are complex and require the help of a skilled estate planning attorney to navigate successfully.

Reference: Wealth Management (March 1, 2024) “Financial Planning for Families with Disabilities”

How Do Special Needs Trusts Work?

Preparing an intentional plan for beneficiaries is essential for several reasons. First, careful planning protects vulnerable beneficiaries from people who may try to take advantage of them when they receive an inheritance, according to the article “Be proactive if considering special needs” from The News-Enterprise.

Second, planning is almost always necessary to protect government benefits the beneficiary is receiving, which could be at risk if they receive an inheritance. Third, proactive special needs planning is needed to make decisions in advance about living situations, guardians if required and who will control the beneficiary’s assets.

The two most common types of Special Needs Trusts are the First Party and Third Party trusts.

First-Party Special Needs Trusts are used when the recipient of public benefits receives money that would make them ineligible for public benefits. This usually occurs because of a legal settlement or an inheritance.

This type of trust is funded with assets in the beneficiary’s own name, and the requirements are strict. The trust must be irrevocable, funded entirely with the beneficiary’s own assets. It must be set up by a parent, grandparent, legal guardian, or the court, except for some physically disabled beneficiaries.

There is an age limit for First Party Special Needs Trusts. The beneficiary must be under 65 when the trust is established, and the trust must include a provision that the state will be repaid first for money paid out on behalf of the beneficiary.

This provision allows the trust assets to be stretched to supplement the beneficiary's needs without losing public benefits. Whatever assets are left in the trust may end up with the state on the beneficiary's death.

The First Party trust is a good emergency plan. However, it’s not a great primary planning instrument for every Special Needs family.

Third-Party Special Needs Trusts are created proactively, allowing for greater flexibility and asset protection. They can be revocable or irrevocable, act as a standalone trust, or be part of a last will and testament and do not need to contain a payback provision to the state.

Another option for giving assets to beneficiaries is an ABLE account, similar to college savings accounts but designed for Special Needs individuals. They allow for simplified spending categorization and, in some states, offer a debit card the beneficiary can use, which allows limited spending.

There are limits to how much can be deposited into an ABLE account, and there is a payback provision to the state upon the account owner's death.

An experienced estate planning attorney can help create an intentional and proactive plan to ensure the best result for beneficiaries and their families.

Reference: The News-Enterprise (Oct. 14, 2023) “Be proactive if considering special needs”

Is ABLE Account the Same as Special Needs Trust?

Many families help their disabled loved ones with whatever resources they have, if they can, but this must be done carefully to protect eligibility for government aid, reports a recent article titled “Here’s how ABLE accounts, special needs trust differ…and how they can work together” from CNBC. An ABLE account—named for the Achieving a Better Life Experience Act—can be paired with Special Needs Trusts to improve the quality of life for the disabled family member.

How do Special Needs Trusts work?

The two types of Special Needs Trusts are known as Third-Party and First Party trusts. The Third-Party Trust is funded by parents or others and are only for the disabled person’s needs. When the parents pass, the funds go to someone else. A First Party Trust is created with the disabled individual’s own funds and is used to shelter any income, earned or inherited, to maintain their eligibility for Medicaid, which has both income and asset limits. Any distributions from the First Party Trust must be approved by the trustee. After the death of the disabled individual, Medicaid will make a claim on any funds in the First Party Trust

Special Needs Trusts (SNTs) may not be used for certain expenses paid for by government programs, including groceries, medical expenses covered by Medicaid and housing expenses, which are covered by Supplemental Security Income (SSI).

Expenses not covered by government programs can be paid from ABLE Accounts. The ABLE account is a tax-advantaged saving account similar to the 529 accounts used for college savings. Funds may be used for expenses that maintain or improve the individual’s health, independence, or quality of life. Funds can be used for education, recreation, personal technology and more.

Medicaid can clawback funds from the ABLE account after the death of the recipient.

There are requirements and limitations to the ABLE account. In 2022, only $16,000 may be contributed per year. Most parents leave more than this amount for their disabled children, so a different vehicle is needed for inheritance.

Here’s where it gets interesting: A trustee for a SNT can make a distribution to the ABLE account to help cover expenses not permitted to be paid from the Trust.

An estate planning attorney can help the family plan for the present and the future to use these and other strategic planning tools for a disabled individual.

Reference: CNBC (June 30, 2022) “Here’s how ABLE accounts, special needs trust differ…and how they can work together”

What Is Best Way to Spend ABLE Account Money?

An ABLE Account (Achieving a Better Life Experience Account) is a tax-advantaged savings account available to individuals diagnosed with disabilities. It lets them save without putting their public benefits at risk. Contributions to the ABLE account may be made by the account owner, family members, friends, trusts or any other person, as explained in the article “What Qualifies as Eligible Expenses for an ABLE Account?” from Investopedia. The money can be maintained in the account tax-free or spent on certain expenses, which are called “eligible expenses” or “Qualified Disability Expenses” (QDEs) and cover a broad range of goods and services. In some cases, figuring out if an expense meets the criteria is easy. However, in others, it is not so clear.

Typical QDEs include education, employment training, food, shelter, transportation, assistive technology, health, prevention and wellness, financial management of the ABLE account, including oversight and monitoring, legal fees, funeral and burial expenses. In all cases, keep detailed records of how ABLE funds are spent, just in case there is a dispute about whether an expense qualifies.

The law governing ABLE accounts does not spell out every single QDE. Sometimes the IRS or Social Security Administration will issue guidance to clarify whether an item is a QDE. The law says the term should be “broadly constructed to permit the inclusion of basic living expenses and should not be limited to items for which there is a medical necessity, or which provides no benefits to others in addition to the benefit to the eligible individual.”

Note that ABLE account funds may be used for a vacation, if it helps maintain or improve the health, independence, or quality of life for the disabled individual. The food category includes more than groceries: food delivery and restaurant meals are included.

A few tips:

• If in doubt, use non-ABLE money and save the ABLE funds for eligible purchases.
• Use public funds when possible. For instance, Medicaid may pay for transportation to a health care provider or educational programs.
• Keep extensive records, especially for items you are not sure about.

It is great for the disabled individual to have this much flexibility. However, it can also be confusing. An elder law estate planning attorney will be familiar with the guidelines and help ensure that the funds are used properly.

Reference: Investopedia (Feb. 25, 2022) “What Qualifies as Eligible Expenses for an ABLE Account?”

How Do I Align Retirement Planning with Planning for a Special Needs Child?

Neglecting to update an estate plan is always problematic. However, failing to update an estate plan when the family includes a special needs child can lead to disaster. An article from Barron’s titled “Retirement Planning? Don’t Forget to Review Plans for Special Needs Children” explains how this can be prevented before problems arise.

Decisions made in the past may no longer be appropriate, or even permitted. A grandparent may have been named as a guardian ten years ago and may have moved to another part of the country or died. A retirement plan based on selling the family home and downsizing to a small apartment may no longer be feasible. Healthcare insurance choices may be limited after retirement. In other words, life changes and estate plans need to change also.

Children with special needs who receive Supplemental Security Income (SSI) and Medicaid may not have more than $2,000 of assets in their name. If they are listed as beneficiaries on retirement plans or life insurance proceeds, they will become ineligible for these benefits. Money should never be left directly to a child with special needs, but it can be left through a Special Needs Trust. Parents may not realize how critical this is, or they may overlook changing beneficiary designations. Either way, the results can be financially devastating.

Talk with grandparents and any relatives who might want to leave something to a special needs child. Chances are they have no idea how an inheritance can impact a special needs family member.

Laws concerning funding a Special Needs Trust have changed. The ten-year rule on required distributions no longer applies to beneficiaries of qualifying Special Needs Trusts, so the SNT may be a beneficiary of a qualified retirement plan. A Roth IRA may be the best way to leave assets to an SNT, as there are no taxes due on withdrawals.

Life insurance is often used to care for a special needs family member. A second-to-die life insurance policy can be used to insure both parents and pay to the SNT on the death of the second parent, when the money is needed most. If one parent doesn’t qualify because of health issues, their underwriting may be balanced by the good health of another parent, which may keep premiums reasonable. Make sure the laws of your state and financial institution permit the proceeds to be directed to an SNT.

An ABLE account is a tax-advantaged savings plan for individuals with disabilities. The account can be opened for an individual at any age, as long as the disability onset occurred before age 26. Talk with an estate planning attorney to ensure the individual will qualify for this type of account. The 2021 annual contribution limit is $15,000. However, there are many exceptions, so don’t do this without professional help. For instance, SSI may be suspended, if the account balance rises about $100,000. Be sure the amount in the ABLE account won’t put means-tested programs at risk.

Reference: Barron’s (Oct. 23, 2021) “Retirement Planning? Don’t Forget to Review Plans for Special Needs Children”

Estate Planning for Couples with Big Age Differences

Seniors who are married to younger spouses have a special situation for estate planning, a situation that’s become more common, according to Barron’s recent article “Couples with Big Age Gaps Require Special Attention.”

This kind of family requires planning for the older spouse’s retirement needs and healthcare costs, while determining how much of the older spouse’s wealth should go to the children from any previous marriages while balancing the needs of a future child with a younger spouse. Beneficiaries for all financial accounts, last wills and all estate documents need to be updated to include the new spouse and child. The same goes for medical directives and power of attorney forms.

Social Security and retirement account considerations differ as well. The younger spouse may begin receiving their own Social Security at age 62, or a portion of the older spouse’s Social Security, whichever is greater. If the older spouse can wait to file for Social Security benefits at age 70, the younger spouse will receive more spousal benefits than if the older spouse claims earlier. Social Security pays the survivor’s benefit, typically based upon the older spouse’s earnings.

Pension plans need to be reviewed for a younger spouse. If the pension plan allows a survivor benefit, the surviving spouse will receive benefits in the future. IRAs have different beneficiary distribution rules for couples with significant age differences. Instead of relying on the standard Uniform Lifetime Tables, the IRS lets individuals use the Joint Life and Last Survivor Expectancy Table, if the sole beneficiary is a spouse who is more than ten years younger. This allows for smaller than normally Required Minimum Distributions from the IRA, allowing the account a longer lifetime.

Families that include children with special needs also benefit from trusts, as assets in the trust are not included in eligibility for government benefits. Many families with such family members are advised to use an ABLE Savings Account, which lets the assets grow tax free, also without impacting benefit eligibility. There are limits on the accounts, so funds exceeding the ABLE account limits may be added to special needs trusts, or SNTs.

A trustee, who may be a family member or a professional, uses the SNT assets to pay for the care of the individual with special needs after the donor parents have passed. The child is able to maintain their eligibility.

For same sex couples, revocable or irrevocable trusts may be used, if the couple is not married. Nontraditional families of any kind with children require individual estate plans to protect them,  which usually involves trusts.

Trusts are also useful when there are children from different marriages. They can protect the children from the first marriage and subsequent marriages. A wisely constructed estate plan can do more than prevent legal battles among children—they can preserve family harmony in the non-traditional family after parents have passed.

Reference: Barron’s (July 27, 2021) “Couples with Big Age Gaps Require Special Attention”

Who Pays the Tax on a Special Needs Trust?

One of the reasons to use a Special Needs Trust (SNT) or open an ABLE account is to prevent federal or state benefits for a disabled person to be put at risk. The SNT is a way to hold property for someone without interfering with their eligibility. However, there are no tax advantages to the trust, according to a recent article titled  “How To Factor In Taxes When Considering Special Needs Trusts, Accounts” from Financial Advisor.

Tax results depend on who creates the trust, the terms of the trust and how it’s administered. The trust pays no taxes on any income it earns, as long as that income is passed on to the beneficiary. Trust tax rates are generally higher than individual tax rates. The income to the beneficiary will be taxable at their income tax rate. In some cases, all of the income of a trust might be taxed to the beneficiary, while in others the parent or person who created the trust might bear a tax burden, or the trust itself may be responsible for the tax liability.

An ABLE account is also a tax-favored vehicle, similar to a 529 college saving account. For a person to qualify for an ABLE account, they must have a disability that began before age 26 or be a recipient of Supplemental Security Income (SSI) or Social Security disability insurance benefits or meet other disability requirements.

The ABLE account will not reduce the major part of SSI benefits under the dollar-for-dollar SSI direct support rules, and it won’t be counted as an asset. The disabled person may also use their ABLE account to save earned income. The ABLE account can be inherited, and new rules allow funds in a 529 college savings account to be rolled into an ABLE account.

You can only contribute $15,000 a year to most ABLE accounts, and if the account plus other resources exceeds $100,000, SSI benefits will be suspended. These accounts must be managed carefully to protect eligibility.

The ABLE account varies, depending on the requirements and rules of the state where it is established. Some states offer additional tax benefits, if the person uses the ABLE accounts offered by their home state.

Depending on the state where you open the account, there can be deductions for contributions to an ABLE account. Earnings in the account are generally not subject to taxes, but the funds in the ABLE account may only be used tax-free for qualified expenses that result from living with a disability. Those include education, housing, employment training and special assistance.

The ABLE account is a useful financial tool for disabled individuals, but it does not completely replace a Special Needs Trust or trust planning.

When there are substantial funds, such as those from an inheritance, litigation settlement or a major gift, most estate planning attorneys recommend that those funds go into a Special Needs Trust.

Reference: Financial Advisor (July 12, 2021) “How To Factor In Taxes When Considering Special Needs Trusts, Accounts”

How Do I Plan for a Loved One with Special Needs?

Parents and grandparents do all they can to help their children and grandchildren lead their best lives, and that often extends to the child or grandchild’s adult lives. When estate plans are made, people who can afford to, leave money and property to continue to support loved ones. However, when there is a family member with special needs, planning is different, explains the article “Planning for loved ones with special needs” from The Sentinel. The child may have been born with a developmental disability or a motor disability or developed mental illness or an addiction.

A person who is not able to work or care for themselves often receives public benefits to pay for food, shelter and medical care. Those public benefits will be jeopardized, if parents or grandparents make the mistake of leaving a gift of money or a bequest. Special needs planning addresses this issue.

Public benefits for people with no assets or income include Supplemental Security Income (SSI) to pay for food and shelter, Medicaid for medical care and the SNAP program for food, among others. Before money is given to a disabled family member or left in an estate plan, a review of the public benefits that are in use or available needs to be done, so benefits are not disrupted.

One example is SSI, a federal program that supports disabled persons who cannot earn enough, which in 2020 means $1,260 or more in a month. A disabled person who earns less than that and owns less than $2,000 in assets can receive $783 monthly to pay for food and shelter. If the person owns the home they live in or owns one car, they may still be considered to have under $2,000 in assets. Clothing and personal belongings are also not counted against the $2,000 asset limit.

However, to continue receiving the full benefit amount, the person cannot receive money from family or friends, since that money could be used for food and shelter. This also applies to “in kind” gifts, such as making a mortgage payment or helping with utility bills. Any direct gift reduces the SSI benefit.

There are ways for parents and grandparents to help their loved one enjoy a better quality of life. However, gifts must be carefully planned and within the laws. For instance, a family member may purchase certain services for a disabled person that would not disrupt their benefits. A parent or grandparent could pay for auto repairs, cell phone and land line phone services, educational expenses, medical care and social services. One very important note: the payments must be made directly to the merchant or provider and not to the disabled person.

There are two primary tools used to consider, when helping a special needs or disabled person:

Special Needs Trust: The gift is placed in the control of a trustee who manages the money, invests it, makes the appropriate tax filing and makes the decision about when to distribute funds.

Most family members don’t understand the web of complex regulations that dictate how public benefits work. Properly created and managed by a responsible trustee, the Special Needs Trust avoids putting the burden of financial care on other family members and lets money be wisely distributed.

Money and property in a Special Needs Trust is not considered to be an asset of the individual, as it is owned by the trust. However, the same restrictions apply to making direct distributions from the trust to the individual beneficiary for food and shelter.

The other account is an ABLE account, created by the Achieving a Better Life Experience law. Anyone can contribute to it and money in the account is not considered income and not counted against the asset limitations. Contributions are currently capped at $15,000 per year, and the account cannot contain more than $100,000.

Distributions from the ABLE account can be used to pay for a wide array of expenses for a disabled person without impacting government benefits. That includes housing, transportation, assistive technology, health, education and other needs. Families need to be aware that the disabled individual owns the assets in the ABLE account. If they are unable to manage money or are susceptible to scams, the family will want to be cautious about putting funds into the account.

Reference: The Sentinel (Nov. 20, 2020) “Planning for loved ones with special needs”

How Do ABLE Accounts Work?

It took nearly a decade of lobbying, but in 2014, Congress passed the Achieving a Better Life Experience Act. The law, referred to as ABLE, lets people with disabilities open a tax-advantaged account, similar in many ways to 529 accounts used to help with college funding. ABLE accounts are explained in the article “Everything You Need to Know About ABLE Accounts” from U.S. News & World Report.

The accounts allow eligible individuals to save money without putting their eligibility for government benefits at risk. The income from the account is not used for means testing for Social Security Income or Medicaid.

However, despite these benefits, ABLE accounts are still not widely used. Less than 57,000 accounts have been opened nationwide. Here’s more information on how they work.

Why would a disabled person want an ABLE account? Living with any type of disability is costly. There are out-of-pocket expenses for transportation, housing, and education that may not be covered by government programs. Those programs limit a person’s assets to $2,000. Prior to the ABLE Act becoming law, that meant that a disabled person could not save money for their own use. While there are limits to the size of ABLE accounts, they provide an opportunity for a financial cushion.

Who is eligible for an ABLE account? A person who became blind or disabled before age 26 may be the beneficiary of an ABLE account. Someone who is receiving SSI or Social Security Disability benefits is automatically eligible to open an account. Others will need to meet Social Security’s definition of being disabled and have a doctor’s letter stating that they are disabled to qualify.

Do all states offer ABLE accounts? There are 42 states, plus the District of Columbia, that offer ABLE Accounts. But a disabled resident of a state that does not offer ABLE accounts can open one with another state’s program. Right now there are 26 states that let anyone open an account, and the rest limit their programs to state residents. An estate planning attorney will know what your state’s rules are.

Are there tax incentives for using an ABLE account? This varies by state. Michigan and Arkansas let single filers deduct $5,000 in contributions to an ABLE account on their state tax forms. For joint filers in these two states, the maximum deduction is $10,000. In Illinois, there is a state income tax deduction of $10,000 for a single filer and $20,000 for joint filers. For Kansas, deductions are smaller; $3,000 for individuals and $6,000 for couples. New York State and California do not allow any deductions.

How much can be contributed to an ABLE account? $15,000 a year is the limit for annual contributions. Be aware that the first $100,000 of an account’s balance is shielded from asset means testing for government programs. Once the account reaches $100,001, it could impact SSI benefits.

What expenses can the ABLE account be used for? The account is designed to be used by people with disabilities, so things like medical treatment, transportation, education, and assistive technology are permitted uses. The expense must be related to a person’s disability.

Does it cost anything to open an ABLE account? This varies by state. In Ohio, you’ll pay $30 to open an account if you are a resident; out of state fees are $42 annually. In New York, only residents can open accounts, and the fee is $45 to open an account online and $55 if it is done on paper by mail.

Should a Special Needs Trust be used instead of an ABLE account? Many families chose a Special Needs Trust instead of an ABLE account. These trusts cost more to setup, but also offer more flexibility. They once were the only option. An estate planning elder law attorney will be able to guide the family as to which is the best solution for their disabled family member.

Reference: U.S. News & World Report (February 18, 2020) “Everything You Need to Know About ABLE Accounts”

Protecting Adult Children with Disabilities

One in four Americans has some kind of disability, and an increasing number of children are being diagnosed with some form of autism. The life expectancy for people with Down syndrome has increased from living to age 12 in the 1940s to nearly 60 today. Most children born with cerebral palsy live into their thirties. For parents of these children, it is more important than ever to create a plan and a community, says the article “How to build support system for adult children with disabilities” from The San Diego Union-Tribune.

Financial resources and support services need to be put into place, for when parents are no longer able to provide care. Here are the key points to address:

Preserving the child’s eligibility for government assistance programs, including Supplemental Security Income (SSI) and Medicaid, through the use of a Special Needs trust. Any amount of money can be placed in the trust, and the funds don’t count when determining eligibility. If parents leave money directly to a child, they will lose their ability to get SSI and Medicaid benefits.

Start early. A Third-Party Special Needs trust should be set up before the child turns 18. It doesn’t need to be funded, but it needs to be created.

Be a stickler for the rules. If the child receives SSI, money from the trust may not be used for food and housing, but it can be used for other costs, like therapies that are not covered by Medicaid, or even extras, like a cellphone or vacation. An experienced elder law attorney will be able to help the family with planning and learning the intricacies of these rules.

Name a trustee and a successor trustee. Selecting someone to manage the trust on behalf of the child is a critical decision, and not always an easy one. The trustee should be someone responsible who cares about your child’s well-being. It could be a sibling, if the relationship is good, or a family member. The person should be younger than the parents, so they will be around after the parents have passed.

Open an ABLE Account—Achieving a Better Life Experience account. These are accounts that work in much the same way as a 529 account. They can be established for a disabled person at any time, but the child must have the qualifying disability before age 26. Money from a Special Needs trust can be moved into an ABLE account, and the beneficiary can use it for any qualified disability expense.

Prepare a letter of intent or guidance. This is not a legally binding document, but rather a way of sharing information with others about your child: their preferences, routines, comfort levels and wishes. It can also be used to provide information about caregivers, medical providers and others who are a good fit with your child. You may also wish to share information about what and who they don’t like. Update the letter every year or two.

Power of Attorney. Having a power of attorney for a disabled individual is far more flexible and less costly than a conservatorship or guardianship.

Housing options. Where will your child live? That depends on what kind of disability the child has and the family’s financial resources. Ideally, the child can transition from the family home to another place while the parents are still living. If feasible, the parents could leave the family home to the child in the Special Needs trust, but they’ll also need to leave enough money for ongoing expenses and maintenance of the house. Some disabled adults live in group home settings, where counselors and other staffers help residents live on their own.

An elder care lawyer will be able to connect the family with many different resources and help with creating a Special Needs trust.

Reference: The San Diego Union Tribune (Jan. 9, 2020) “How to build support system for adult children with disabilities”