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Introduction to Special Needs Legal Planning

Caring for a loved one with a physical, intellectual, developmental, or other disability can involve many obstacles and difficulties on a daily basis. Between specialist appointments, IEP meetings, occupational and speech therapy, and caring for your child’s basic needs, among others, there is often little time to take care of the tasks of today, let alone plan for tomorrow. On top of it all, your thoughts may be clouded with legal and financial concerns related to your loved one’s future:

  • Who would raise your child if something unexpected happened to you and/or your spouse?
  • How can you ensure enough money is left behind if your child should require a lifetime of care?
  • What happens when your child turns 18? How can you continue to make or help them make their own medical and financial decisions?
  • How can you ensure your child is not taken advantage of financially or emotionally if you are no longer there to protect them?

While each legal situation is as unique as your child's, we can provide you with an overview of possible options and a roadmap for the future. With a list of possible options and a few simple action steps, you can feel empowered and supported in taking control of your concerns and start proactively planning for your child’s future.

Estate Planning For Those With Special Needs

A large part of planning for the future involves ensuring that your assets are distributed to your family members. This process becomes slightly more complicated when considering how to leave assets to an individual with disabilities. As leaving assets in the name of an individual with disabilities can upset their eligibility for government benefits, leaving assets to a special needs trust may be a better fit. If an individual is not receiving any means-tested benefits, you may choose to name them as a beneficiary of your assets; this will ensure that they can use any leftover funds to pay for necessary supports and services. We recommend updating your list of beneficiaries regularly to ensure that there will not be a delay in the transfer of funds after your passing.

In the alternative to a Will, you can also establish a trust, which enables you to bypass the probate process that often takes months. With a trust, there is a direct transfer of assets to your named beneficiaries after you pass away. Similarly, if you are concerned about the care of your child after your passing, you may want to create a letter of intent, which can appoint a new legal guardian after your passing to care for your child. A letter of intent can serve as a guide for the guardian to know how to care for your child; this can include their daily schedule, diet, medical care, and other essential information.

Special Needs Trusts

Special needs trusts can be established in a variety of ways. For instance, trusts can be either revocable or irrevocable, and they can be set up during your life or can spring to life upon your passing. There are numerous sources of funding that can be used in creating and maintaining a trust. Among the most popular are gifts and inheritances, life insurance, settlement pay-outs, real estate and property, ABLE accounts, and child support. Depending on the source of funding, the trust can be either first-party, or third-party, and a pooled trust can also be utilized instead of having an individual trust.

Beyond first- and third-party trusts, there are also other categories of trusts, including directed and delegated trusts. A majority of trusts are delegated, meaning the trustee is responsible for everything. Even when there are co-trustees, they both share the same responsibilities and liability. Directed trusts, on the other hand, allow you to break up responsibilities, or bifurcate them so that the responsibilities can be split amongst individuals in different positions.

Directed trusts are not permitted in all states; however, you can establish your trust in any state that allows directed trusts. This process is known as a trust situs. Selecting a state, or situs, determines where the trust originates and what state laws will govern the trust. In a directed trust, there is usually an administrative trustee, investment advisor, and distribution advisor.

At Planning Across the Spectrum believe it is best to use a directed trust and to carefully appoint trusted professionals to each position. Having a separate investment advisor who is an expert in the area is extremely important. While you could have a family member fulfill some of these roles, we highly recommend using a corporate trustee who is reliable and knowledgeable. The same applies to selecting your distribution advisor; selecting a benefits expert can be a great choice.

First-Party Trusts

First-party special needs trusts are irrevocable, meaning they cannot be revised. As the name implies, first-party trusts can be established by the individual with special needs who will serve as the trust’s beneficiary. To do so, the trust must be funded using the income and assets of the trust’s beneficiary rather than those of other individuals.

A common source of funding for first-party special needs trusts is personal injury settlements or similar large sums of money that are in the name of an individual with disabilities. This can also include money or property the beneficiary inherited outright. First-party special needs trusts that are not part of a pooled trust are only for individuals under the age of 65 when the trust is established and funded.

First-party special needs trusts are also subjected to a Medicaid payback provision, meaning that after the beneficiary passes, all amounts remaining in the trust, up to the amount equal to the total of medical assistance benefits paid on their behalf by Medicaid, are repaid. Any leftover funds after the Medicaid payback can be distributed to other remainder beneficiaries.

Third-Party Trusts

Third-party special needs trusts are established by someone other than the trust’s beneficiary and can be funded using the income and assets of the grantor or other individuals, excluding those of the trust’s beneficiary. Unlike first-party trusts, third-party trusts can be structured to be revocable rather than irrevocable, meaning that the trust can be amended as needed.

The two different types of third-party trusts are testamentary and standalone trusts. Testamentary trusts are created from a Will; in other words, the trust is created after you pass away, so it does not exist prior to that event. In this process, the probate court is heavily involved; it is responsible for setting up the trust, maintaining oversight, and requiring regular accounting. A standalone trust is independent of your Will, meaning it can be created during your lifetime without the need for overreliance on the probate court for oversight.

A testamentary trust almost never makes sense. From the outset of estate planning, it is less expensive to leave the instructions in the Will. But in estate planning, like everything else, you get what you pay for. Although, in theory, a testamentary trust will be created with your wishes in mind, there is a possibility that the trust will not be set up as you initially intended, and you will not be able to correct it. This is why it’s incredibly important that you make sure it is done correctly. Since a testamentary trust goes through probate, you have less control over it; so, why would anyone want a testamentary trust?

There are a few reasons why a testamentary trust may be preferred by an individual. For starters, it appears to be an easier route to take. It is much easier to say “I’ll do it later” than to actually get started on a tedious project. The same theory applies in setting up a testamentary trust because you are not actually setting up the trust when you create your Will and estate plan. Instead, the trust will be created in the future by someone else on your behalf. In addition to the ease of setting up a testamentary trust, it is also more beneficial to some in terms of financial costs. Testamentary trusts are cheaper initially because you are not fully setting up the trust at the immediate moment. However, going through probate is very expensive.

Additionally, testamentary trusts can be problematic if there are multiple people intending to leave the special needs beneficiary money in a trust. If anyone other than yourself leaves money to your loved one, they will need to establish another trust, which means more expenses and additional complications with trust management.

A standalone trust alleviates this burden because you can ask that other individuals name the one standalone trust in their Wills instead of creating their own testamentary trusts. This also allows for more flexibility in trust contributions from friends and family members and reduces the complexity of neurodiverse financial planning. For example, creating one standalone trust that grandparents, aunts, uncles, and others can contribute to at any time is far more streamlined and easier to manage than if four grandparents each created their own testamentary trust, which would result in additional reporting to the probate court, greater taxes, and overall, a greater amount of work.

This factor alone demonstrates how standalone trusts provide a lot more flexibility and control over your intentions for the future. In the long run, they are less expensive especially when you consider how costly probate can be. While it is more work and additional expenses upfront, it is usually worthwhile to set up a standalone trust in which you have more direct control than waiting until after you are gone to start planning for your loved one’s financial future.

Pooled Trusts

Instead of establishing and managing an individual trust, a pooled trust might be more beneficial. Pooled trusts provide you with access to professional trustees who can alleviate the responsibility of managing complicated special needs trusts that may be too troublesome for family members or friends to handle and understand. With pooled trusts, you are acquiring the services of individuals well versed in special needs planning, benefit rules, and knowledge about investment opportunities and local services.

Pooled trusts can also be a good option for individuals with a smaller trust, as many corporate trustees have account minimums of $500,000 or more. Pooled trusts generally accept accounts of all sizes. Pooled special needs trusts are managed by nonprofit organizations; they combine the resources of multiple beneficiaries to optimize investment opportunities and to make the administration more cost-effective. With greater investment opportunities comes greater diversification, which can reduce risk and provide stability.

To participate in a pooled trust, a first-party or third-party trust can be used. Each beneficiary will have their own sub-account and will receive a proportionate share of the entire fund’s earnings.

Depending on the state, all or part of the remaining funds in a first-party sub-account upon the passing of the beneficiary may be retained by the pooled trust. If the funds are not retained by the pooled trust, they are subject to Medicaid reimbursement for any services covered during the beneficiary’s life. If there are any remaining funds after satisfying the Medicaid payback provision, the funds can be distributed to designated beneficiaries. As to remaining funds from a third-party sub-account, there is no Medicaid payback provision, and the nonprofit may choose to retain the funds for administrative purposes.

There are many different nonprofit organizations offering pooled trust services in each state. Finding the right one can be difficult; not all pooled trusts are created equal, and sometimes the number of available programs itself is overwhelming. We can help you to find the program that would work best for your needs.

Selecting Special Needs Trustees

When establishing a trust, it is extremely important to consider who to name as a trustee. A lot of the time, people look for the easy option and assume a sibling or other family member will be the trustee. The problem with this is largely related to the fact that many individuals underestimate the responsibilities and time it takes to take care of an adult dependent and/or maintain their benefits, programs, and important decisions. Serving as a trustee comes with great responsibility which can be time-consuming and overwhelming for some. It also tends to detract from the ability to serve as an advocate and ally for your loved one.

Trustees must uphold professional standards of impartiality and are responsible for providing many services. Trustee obligations include self-dealing and impartiality, titling and accounting, and reporting to SSA, Medicaid, and court, among other responsibilities. In addition to serving all of these roles, the trustee must also have a strong understanding of how public benefits work and be able to keep track of all regular payments (ex. property taxes, car payments, utilities, and grocery expenses).

Instead of naming a family member as a trustee, the position of trust protector may be a better fit. The trust protector is more of a guardian who oversees the trust. Serving in such a position, a trust protector can appoint a corporate trustee or a qualified attorney to serve as trustee.

At Planning Across the Spectrum, we are in favor of appointing a corporate or professional trustee rather than having a family member in this role because of the additional stress and burdens it can place on an inexperienced individual, let alone considering the amount of time it takes to continuously fulfill the responsibilities.

If a brother were serving as a trustee for a sibling’s special needs trust, the brother will likely face additional burdens of trying to help support their sibling while also maintaining their own work/life balance and focusing on their own life goals. It may even be difficult to plan for a small vacation due to a concern that, while he is away, something would happen. But, to really allow the other family member to live their own life, and to really be that support, to be able to be their best advocate (without also being their boss or their parent), it is really important to consider not having the family member as trustee. This is why being a trust protector is usually a better fit for family members. As a trust protector, a family member can oversee the trust management and reappoint professionals as needed. Serving as a trust protector is still a critical role that should be filled by a strong advocate and support for the individual with special needs. If you are not sure where to start, our special needs advisors can help you to get started. At Planning Across the Spectrum, we are committed to helping you turn your goals into realities. Our certified financial planners and advisors to the neurodiverse are a great resource; we can help you build your professional team and can also serve as your investment advisors.

Special Needs Trusts – Not a Cure-All Solution

While special needs trusts can be a valuable tool for some, they are not ideal for everyone. In fact, a special needs trust could be more of a hindrance than a help depending on the situation. We recommend first evaluating the needs and skills of the individual with disabilities, both with the individual and with a certified financial advisor, before even considering establishing a trust. Some of the reasons why a special needs trust may not be a good fit are if your loved one is largely independent and not in need of assistance managing their own finances. If your loved one is also not dependent on means-tested government benefits or programs, there is even less of a need for a trust. And if your loved one has a strong and extensive support system that they can utilize in making decisions and learning how to be more independent, a trust would simply be more restrictive of their autonomy, and thus work against the progress they are making toward financial independence. Many times we recommend ABLE accounts, and even if someone needs a trust, we usually recommend they have an ABLE account as well! If you have a special needs trust or are considering creating one, our trusted advisors at Planning Across the Spectrum are dedicated to evaluating your plans and helping to make decisions that are in your best interest.

Guardianship v. Supported Decision Making

In special needs planning, we tend to advocate for the least restrictive environment. We want individuals with disabilities to have as much freedom and autonomy as possible. When an individual turns 18, a lot of uninformed parents will choose guardianship, which is the exact opposite of what they were advocating for in providing their child with support to help them thrive when faced with difficult situations.

Guardianship is a legal process that involves a court determining if an individual is physically or mentally incapable of making reasonable decisions. If the court decides that the individual is incapable of making decisions, they can appoint an individual to serve as a guardian, having the ability to make decisions on behalf of the individual, including decisions related to their person and property. In this sense, guardianship treats an adult as a minor in the eyes of the law. As such, the individual is no longer in control of their own bank accounts or personal affairs, and may not be able to own a business, obtain a driver’s license, vote, or get married. While guardians are expected to act in the best interests of the individual, that is not always the case. While guardianship may be appropriate depending on the situation, it often should not be the first resort.

In the alternative, partial guardianship may be a better fit, as a guardian can be appointed over the financial decisions of an individual while leaving personal decisions up to the individual. Even better than partial guardianship, however, is supported decision-making. Rather than being stripped of their rights and having someone make decisions on their behalf, an individual who opts for supported decision-making can choose supporters to help them make informed decisions. Doing so entails creating a written agreement with the individuals selected to serve as support. Multiple individuals can be selected, and they can be appointed to different topics, including healthcare, employment, and/or financial decisions. As support, individuals are expected to provide guidance and information so the individual can make their own decisions. In this way, supportive decision-making fosters independence, self-advocacy, confidence, and critical thinking skills.

While not all states have officially adopted a supported decision-making program, the same outcome can be accomplished using legal documents, such as powers of attorney, to promote independence and individual rights in the least restrictive environment for individuals with special needs.

When choosing between guardianship and supported decision-making, consider this question: Do you want to make decisions for your child, or decisions with them? Check out our “Should I Apply for Guardianship?” one-page flow chart.

Letter of Intent

Creating a letter of intent is a great place to start in your endeavor to legally plan for the security of your loved one’s future.

The documentation that you create with us will be quite detailed and will take an incredible amount into consideration, but it will likely not cover every possible concern or wish you may have for your child’s future care. For that purpose, many parents work with us to create a Letter of Intent. The Letter of Intent is along the lines of a personal letter, rather than being a more formal legal document. It is used to supplement the special needs plan in order to provide additional information in the following ways:

  • Overview – A summary of the child’s life to date and your aspirations for the future
  • Family history – Information and “favorite memories” relating to parents, grandparents, siblings, and friends, as well as the child
  • Medical care – Detailed description of disabilities, with a medical history, medications, and current healthcare providers
  • Benefits – List of programs such as Medicaid and Supplemental Security Income (SSI), in which the child is enrolled, agency contacts, case numbers, documentation requirements
  • Daily> routines – Activities the child loves or hates and chores they typically perform
  • Diet – Likes and dislikes, allergies, interactions with medication
  • Behavior management – Programs in place, level of success, unsuccessful past efforts
  • Residential – Current living arrangements and changes that may be necessary in your absence
  • Education – Programs to date and preferences for the future
  • Social life – Activities the child enjoys, including vacations
  • Career – Types of work he enjoys/might enjoy and supports required
  • Religion – Role it plays in a child’s life
  • End-of-life – List preferences and arrangements that have been made

The letter is typically addressed to the people who will be caring for your child once you are unable to fulfill that role. When the time comes, your attorney will share the Letter of Intent with the child’s caregivers, as well as with the trustee. They can use the letter to help interpret your desires and to help follow through on the wishes you have for your child.

At Planning Across the Spectrum, we offer an exclusive benefit for our ongoing investment management services in neurodiverse companies clients that includes no-cost access to Hope Trust, an innovative special needs life care planning digital platform, and an optional corporate trustee to helps not just create, but also update your Letter of Intent in an easy to use digital platform.

We are not attorneys. We are partners with qualified attorneys across the country, and many times are the first step in developing a plan. We will work with your legal team in developing a financial plan with your loved one’s unique needs in mind. Our comprehensive special needs financial planning services include a full review of your legal strategy and coordination with the legal team of your choosing and recommendations that can be implemented by your current attorney, or our trusted qualified network of professionals.