Financial Tools and Future Disability Planning: Trusts and ABLE Accounts

With proactive planning, we can make a bigger impact with our money and our time.

When a client comes to you and you learn they have a child or other family member with a disability, one of the first questions we should be asking is: What is the plan for this individual’s future, and how do we establish a plan now to help secure their long-term health and wellbeing?

For any individual receiving means-tested benefits through federal Medicaid or other state programs, a special needs trust (SNT) and/or an ABLE account (a tax-advantaged savings account for individuals with disabilities and their families) should be part of the conversation.

As an attorney who has worked with families impacted by disability for more than 10 years, and as an individual who has been part of the disability family community for much longer than that, it is one of my great passions to ask these questions early to be proactive in planning for a family member with disabilities. This article will walk you through two types of special needs trusts available and briefly cover how ABLE accounts can also be part of that conversation around future planning.

What is the Need for a Special Needs Trust (SNT)?

One often overlooked purpose of SNTs is the management of assets for an individual with a disabling condition. A trust is a way to dictate how money left to an individual with disabilities should be spent during their lifetime. It also allows for preserving assets from judgments arising from legal actions against the beneficiary of the trust.

However, when we typically think of SNTs, we think of the preservation of means-tested benefits by creating an exempt resource. The resource limit for Medicaid programming is $2,000 in countable assets. As any reasonable person can understand, $2,000 falls far short of an individual’s monthly needs, and supplemental assets will likely be needed to provide for living expenses. A Special Needs Trust is also referred to as a Supplemental Needs Trust because it specifically provides for supplemental funding over and above what is otherwise provided by means-tested benefits. An SNT is an exempt resource and therefore does not count against that $2,000 limit when it is drafted and administered properly.

There are two types of SNTs that can be set up and managed privately:

First-Party Special Needs Trust

A First-Party SNT is a Trust that is established with the assets of an individual with a disability. That individual may have received funds by way of a settlement, an inheritance, or money that they had at the time of their disability. A First-Party SNT has specific rules that must be adhered to for that trust to be considered a qualified SNT:

o Restrictions on expenditures are restricted to the “extra and supplemental needs” of the beneficiary.

o Beneficiary must be disabled and under the age of 65 at the time of creation

(can’t add anything after 65).

o There is a Medicaid pay-back provision.

o The trust is created by a parent, grandparent, guardian, court, or beneficiary.

o The beneficiary is the sole beneficiary of the trust.

o Discretionary Trustee powers - the beneficiary has no power to demand money

from the trust.

o The trust is irrevocable.

Third-Party Special Needs Trust

A Third-Party SNT is a trust that is created with assets that do not belong to the beneficiary. This type of trust has some of the same restrictions as the First-Party SNT, but a key difference is that the Third-Party SNT does not have a Medicaid pay-back provision requirement.

A key difference is that the Third-Party SNT does not have a Medicaid pay-back provision requirement.

When there is no Medicaid pay-back provision, the creator of the trust can dictate where that money will go after the beneficiary dies. Many of my clients choose to name a charity that has greatly impacted their family, such as Seattle Children’s.

What is an ABLE account?

The Achieving Better Life Experience (ABLE) Act amended Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. An ABLE account is a type of tax-advantaged account that an eligible individual can use to save funds for the disability-related expenses of the account’s designated beneficiary, who must be blind or disabled by a condition that began before the individual’s 26th birthday.

Annual contributions to the account are limited to $17,000 and the total amount in the account is limited to $100,000. In the event that an individual works, the ABLE to Work Act allows beneficiaries who are employed to contribute an amount equal to their current year’s gross income (up to a maximum of $13,590 in 2023) each year to their ABLE accounts in addition to the annual standard contribution limit of $17,000.

In the event that a 529 plan had previously been set up for the individual, that account can be rolled over into an ABLE account for the same individual with no tax or penalty. The amount of the rollover is still subject to the annual contribution limit of $17,000.

Funds may only be used for Qualified Disability Expenses (QDEs). QDEs are expenses that relate to the designated beneficiary’s blindness or disability and are for the benefit of that designated beneficiary in maintaining or improving their health, independence, or quality of life. QDEs are defined very broadly and do not need to be medically necessary. The critical difference in contrast to an SNT is that ABLE resources can be used to pay for housing and groceries. ABLE accounts are also subject to the Medicaid pay-back provision, similar to a First-Party SNT.

Does the ABLE account replace Special Needs Trusts?

ABLE accounts do not replace special needs trusts, but there are times when an ABLE account or SNT may be more appropriate.

o Example 1: Austin was on Supplemental Security Income (SSI) until he got a job at the courthouse doing office administrative work. He has worked hard and receives $1,385 in wages each month (with the assistance of a job coach) and $264 in SSI each month ($85 are exempt from SSI reduction, and then half of what is remaining ($650) is subtracted from the SSI total ($914) to calculate what Austin should be receiving in SSI ($264)). His total of $1,649/month is very close to the $2,000 limit that he needs to remain under not just for the SSI but also, and more importantly, for his job coach and long-term care benefits. Austin could establish an SNT, but it might make more sense for him to forgo the expense of setting up an SNT and set up an ABLE account instead.

o Example 2: Jane has Down syndrome and receives SSI and does not work. Jane was in a car accident and her portion of the settlement from that accident is $200,000. Jane can’t put all the money into an ABLE account for a number of reasons. It is more than the $17,000 maximum annual contribution and $200,000 is more than the maximum amount that the account can hold in Washington ($100,000). I would recommend that Jane either deposit the entire amount into an SNT or contribute the majority to the SNT and then deposit some of the settlement into an ABLE account.

o Example 3: Steven is an individual with cerebral palsy and intellectual disabilities. He is 20 years old and receives SSI. Steven’s paternal grandparents give $5,000 to each of their grandchildren every year for their birthday, but they haven’t been giving that to Steven because they are worried about negatively impacting his benefits. They would also like to leave Steven a portion of their estate when they die. In this case, either the ABLE account or the SNT could be a good option, but an SNT is advisable. The grandparents could contribute $5,000 each year to the ABLE account and that still leaves plenty left in the annual maximum of $17,000 for Steven or others to contribute. However, the ABLE account has a Medicaid pay-back provision. A Third-Party SNT does not have such a requirement, so it is advisable. This Third-Party SNT can also be referenced in the grandparents’ wills, and the inheritance would go directly to the SNT. Doing so ensures that even if Steven’s share is over the annual maximum for the ABLE account he would still be able to receive the entire amount without a negative impact on his benefits. If the client wants to have an ABLE account as well, a provision can be added to the trust to provide for distributions to an ABLE account. Additionally, the grandparents can designate a charity as the remainder beneficiary for the trust after Steven’s death.

As Seattle Children’s Legacy Advisors, each of us has a unique opportunity to educate and inspire individuals to make a meaningful impact for years to come. I’m grateful to be working together on our shared goal of helping kids and families in our community. If you’d like to learn more, please reach out to me at katie@feeneylaw.net. I’m always happy to be a resource.

About the Author:

Katie Hurt is an Attorney at Feeney Law Office, PLLC. The firm is located in Richland, Washington, but Katie works at their satellite office in Issaquah. Her interest in advocacy began when her brother was diagnosed with autism as a child. She chose to pursue a career in the legal profession to better meet the more complex needs of families like hers. Katie earned her Juris Doctorate Cum Laude from Seattle University School of Law and a Bachelor of Arts in Economics and Political Science from the University of Washington. She serves on the Seattle Children’s Legacy Council. Katie Hurt has been named a Super Lawyer Rising Star every year since 2018.

Advice: When your child falls short of their IEP goals

First: what is an IEP? Glad you asked. An Individualized Education Plan–IEP for short–is the roadmap to your child’s academic success. It is a timeline of goals and the plans to meet them specially tailored to your child’s needs. Similar to a report card, school districts are required by law to provide parents regular reports on a child’s progress towards these annual IEP goals. These can pertain to any of the areas in which the child qualifies for Specially Designed Instruction (SDI), both functional and academic, such as: math, reading, written expression, behavior, social/emotional, adaptive, executive functioning, communication, fine motor, and gross motor. Failure by the district to monitor progress on IEP goals denies the student of a Free and Appropriate Public Education (FAPE). 

IEPs are drawn up during an annual meeting between parents and teachers. In it, they collaborate to determine which goals can be reasonably met in the next academic year. These goals must be measurable, designed to meet the child’s needs, and appropriately ambitious. Clarity is key: the IEP should be written with enough specificity that any reader would know the parameters for the goal and if progress is being made. According to the Individuals with Disabilities Education Act (IDEA), there is no criteria for how many goals a student’s IEP ought to have. 

So, what can parents do when they see the same IEP goals recycled year after year? First, parents can ask the rest of the IEP team why they believe the student isn’t making the expected progress and what might be an appropriate solution. They can also make a request–in writing–for a meeting to be held to discuss this lack of meaningful progress. 

Suggested discussion questions:

  • Accommodations: Is the district following the accommodations currently listed in the student’s IEP? Are additional accommodations needed?

  • Modifications: Are the modifications laid out in the IEP being met, or do additional modifications need to be discussed? 

  • Assistive Technology: Ask the team for suggestions on what AT could benefit their student in the classroom. This can be anything from seat cushions and specialized software to any equipment that benefits the student’s learning environment.

  • Related Services: Are there any concerns regarding communication, fine motor and/or gross motor? Has the student been evaluated by a Speech Language Pathologist, Occupational Therapist  and/or Physical Therapist?

  • Behavioral Intervention Plans (BIP): If in place, is the district following the BIP? If behavior is a concern and there is no BIP in place, has the team discussed conducting a Functional Behavior Assessment (FBA)?

  • Progress Monitoring & Reporting: Is the district monitoring the student’s progress on their IEP goals? Is the district providing parents progress reports per the IEP timelines? Does the progress report show data related to the student’s progress?

  • Specially Designed Instruction: The team could discuss when, where, and how frequently the student is receiving SDI. 

  • Placement: Districts are required to place students in the Least Restrictive Environment (LRE) available. The team can discuss if the student’s current placement is within their individual LRE. 

  • Continuum of services: Districts are required to provide a continuum of services based on each student’s needs. This means that different service delivery models are identified and implemented to enhance a student’s education and time spent with neurotypical peers. 

  • Evaluations: When was the student’s last evaluation? Are there any new areas of concern for the team to discuss? Is there any new information to present from outside experts? Parents have the right to request an Independent Educational Evaluation (IEE) at public expense. IEEs are meant to be neutral, conducted by an examiner who is not employed by the district. 

In 2017, Kerri Feeney represented AM, a Mabton high school student, and his family in a due process complaint. AM’s parents expressed serious concerns about the lack of academic and functional progress made by their son. According to an investigation reported by King-5 News

“For three school years in a row — eighth, ninth and 10th grades — [AM] made no documented progress in life skills, communication or academics. His IEPs listed annual goals like identifying a parent's phone number, using a sponge to wipe a spill from a flat surface and improving his ability to write his name. But those goals —along with 21 others — were repeated word for word in his IEPs over those three school years, indicating that [AM] never reached them.”

As part of its investigation, King-5 also interviewed experts in the special education fields. "I have yet to come across a person who does not make progress. I have not met anyone with autism who does not learn," said Arzu Forough, executive director of the Washington Autism Alliance.

Seattle-based neuropsychologist, Wendy Marlowe, told King-5 that “it's not normal for a special education student’s goal to repeat year after year. It's outrageous…They know you're supposed to keep records of progress, and when a student isn't progressing what you're to do is ask yourself, ‘Why not? What do I need to do differently to educate this child?' Instead, what happens is they blame the kid, 'Oh, well he can't learn.' It's not a learning disability. It's a teaching disability. Everybody can learn." 

With the help of Feeney Law, AM and his family were able to come to a resolution with the district. This decision included additional training for the district’s employees and a review of its policies. In 2018, AM finally received the assistive technology essential to his ability to communicate. 

Please contact Feeney Law with any questions or concerns regarding your student’s progress. 

Link to King 5 article:

https://www.king5.com/article/news/local/eastern-wa-school-district-violates-special-education-laws-for-a-decade/281-574478178#longform_chapter

Twice Exceptional: A Student & Family Share Their Story

BD is an 8th grade student identified as “Twice Exceptional,” a student who has the potential for high academic achievement and who has also been identified as having one or more disabilities that impact him educationally.  BD is blind and has also been diagnosed with autism spectrum disorder.  

Kerri Feeney/ Feeney Law Offices PLLC, recently represented BD and his parents in a Special Education Due Process complaint against the Shoreline School District. In the complaint, the parents explained their concerns about the District’s failure to provide educational programs and supports individualized to meet BD’s unique needs as a student with a visual impairment.  For example, the parents complained that BD was not able to fully access educational content because the school district had failed to provide appropriate assistive technology devices.  The  braillist and paraeducators assigned to support BD lacked training.   

On May 24th 2021, a settlement agreement was entered where the Shoreline School District agreed to provide the following:

  • Direct instruction to BD in all areas of the Expanded Core Curriculum. 

  • Instruct BD in how to utilize assistive technology. 

  • Ensure all curricular materials are accessible to blind students before those materials are given to BD. 

  • Provide BD with accessible materials at the same time or earlier than those materials are provided to nondisabled classmates. 

  • Provide BD with daily access to a braille embosser. 

  • Provide BD with access to braille translation software. 

  • Provide BD direct instruction in how to access/use all educational software and platforms utilized by his curriculum. 

BD and his parents were invited to speak at the National Federation of the Blind of Washington to tell the story about how they navigated the educational system. We are excited for this family to share what they accomplished through their advocacy.  You can tune in to hear their story at 10:30 am on Saturday,  November 6, 2021. 

Link to event:

https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fnfbw.org%2Fconvention.html&data=04|01||c4749825eb024ac0316a08d99e4157a7|84df9e7fe9f640afb435aaaaaaaaaaaa|1|0|637714825742741737|Unknown|TWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0=|1000&sdata=ybKMG7OOUNcc19tQN%2FkpiZzmI%2F7dYbFSbzYxzgf+9eo=&reserved=0

Please reach out to Feeney Law Office PLLC with any questions or concerns about the educational services and supports your child receives in the public school system.

BD running Cross Country, Fall 2021