Key Takeaways

  • It’s best to ease estate planning stress with the help of financial professionals and resources. 
  • Experts recommend a special needs trust when estate planning to cater to your child’s specific needs. 
  • If you structure your estate plan accordingly, government benefits should not be affected.
  • Legal solutions, like a power of attorney, can provide extra protection.

The Importance of Estate Planning

Estate planning is a comprehensive legal plan to protect the wellbeing of your child if you were to meet an untimely death or incapacity. Sometimes, disabled children need additional medical and financial guidance to be accounted for during the planning process. 

Common Developmental Disabilities in Children

  • Intellectual disability
  • Cerebral palsy
  • Autism spectrum disorder (ASD)
  • Hearing loss

Source: May Institute

Infographic showing the fact that one in 36 children have been diagnosed with ASD

While this guide focuses on estate planning for children with ASD, you can utilize this guide if your child has any other developmental disabilities. 

It’s important to remember your child’s independence when estate planning. Finding out your child has ASD can be difficult, but according to Manhattan Psychology Group, people with ASD have many strengths and deserve to be involved in their future planning. 

However, immediately involving your child isn’t always possible or the wisest decision. For example, say you started estate planning when your child was a newborn. While you can’t involve your child initially, you can always revisit and update your estate plan as your child grows up. 

Remember, these legal documents should work to protect your child — not limit them.  

Who Can Create an Estate Plan?

A parent, grandparent or legal guardian can create an estate plan for their disabled child or grandchild. In addition, hire a professional to develop a well-rounded estate plan. 

“You need to feel comfortable with the attorney and estate planner,” says Tina Mundelein, a board member of the Down Syndrome Foundation of Florida. “There are even some attorneys out there that will help you out at a reduced rate.”

“It’s important because it’s almost like a partnership with your attorney. They’re designing your plan for you like a roadmap.” 

Mundelein is also a parent who has gone through the process of planning for her child’s future.

The American Bar Association recommends hiring a lawyer, accountant, financial planner, life insurance advisor or broker. 

You’ll also need to meet with your child’s doctors to formulate a long-term health plan. 

A child with special needs visits his dotor.

You don’t have to assume this responsibility on your own, so be sure to include other family members in the process. Determine how you can come together to look after your child’s needs. 

You need to feel comfortable with the attorney and estate planner. There are even some attorneys out there that will help you out at a reduced rate. It’s important because it’s almost like a partnership with your attorney. They’re designing your plan for you like a roadmap.

Assessing Your Loved One’s Needs

Assess your child’s medical and financial needs by creating a care plan, which is also known as a letter of intent. A letter of intent isn’t a legal document, rather, a guide for whoever will take responsibility for your child if the worst occurs. 

Medical

Include current and long-term medical information in your letter of intent. 

Autism-associated health problems extend across the life span — from childhood to retirement age, according to Autism Speaks. 

 Information To Include in Your Letter of Intent

  • Your child’s everyday routine
  • Future surgeries or medical equipment needed
  • List of medical providers and medical history
  • Allergies
  • Medications
  • Significant family history
  • Medicaid or Medicare information
  • Insurance policy numbers

Financial

While raising any child comes with expenses, you may have to expect more for a disabled child. 

On average, autism costs an estimated $60,000 a year through childhood, according to Autism Speaks. Luckily, there are ways to account for such financial costs, like with a special needs trust. 

Image listing estate planning at a glance

Special Needs Trusts

“If I were a parent or grandparent of a disabled person, the best planning option available is a special needs trust (SNT),” Shann M. Chaudhry, an estate planning and asset protection attorney, told Annuity.org. 

“A special needs trust, also known as a supplemental needs trust, is a legal arrangement designed to help individuals with disabilities maintain their eligibility for government benefits while also providing them with additional financial support.”      

Essentially, an SNT ensures your child’s additional needs, which are not covered by government benefits, are taken care of. 

Chaudhry specified the three noteworthy benefits of an SNT. 

3 Benefits of a SNT

  • Improving Quality of Life: The funds can be utilized to enhance various aspects of life, such as therapies, education, recreation and other essential needs that may not be covered by government benefits.
  • Protection: The assets held in a trust are protected from creditors and legal judgments, providing a secure way to safeguard your assets.
  • Flexibility: Trust assets have the potential to be invested and increase in value over time. Additionally, distributions from the trust can be customized to meet the specific needs of the beneficiary.

We also asked Mundelein if she considered a special needs trust for her child. 

“A special needs trust was the only thing we considered,” Mundelein told Annuity.org. “If any person that receives any government services, like SSI, and goes over the $2,000 threshold that includes assets — you lose everything. And I’m not going to risk that. So, therefore, we set up a special needs trust.”

Creating and Funding the Trust

An SNT can be set up by a family member or guardian. Because there is no waiting period to set up an SNT, the process can be completed after meeting with your financial professional and other relevant parties. 

Chaudhry recommends setting up the following important provisions in your SNT trust. 

Trustee Appointment
Specify who will be responsible for managing the trust. While the details of each SNT can differ depending on the specific situation, there are some common provisions that are usually included. These provisions serve as the foundation of the trust.
Purposeful Language
This term refers to the specific intention of only covering additional needs for the beneficiary, rather than their essential support.
Non-Supplanting Clause
This clause is designed to prioritize the use of government benefits as the primary source of support, with the funds provided serving as a supplementary resource. It helps ensure that the funds are used responsibly and in accordance with the intended purpose.
The Spendthrift Provision
A helpful feature that safeguards trust assets from creditors until they are ready to be distributed. This means that creditors cannot access these assets prematurely, which provides added protection for the trust and its beneficiaries.
Termination Provisions
These provisions outline how the remaining trust assets are managed when the beneficiary passes away.
Trustee Powers and Limitations
In this section, we outline the specific actions that a trustee is allowed to take, as well as the actions they are not permitted to take. These guidelines are in place to ensure that the trustee always acts in the best interest of the beneficiary.
Distribution Standards
Distribution standards are guidelines that determine when and how trust assets should be distributed for the benefit of the beneficiary. These standards ensure that the distribution process is fair and beneficial to the recipient.

You can fund your SNT trust in several different ways. Consider speaking to a financial advisor to determine which option works best for you.

SNT Funding Options

  • Life insurance payouts 
  • Savings and investments, including retirement accounts
  • Parents’ state pension benefits after their death 
  • Gifts, assistance and inheritances from friends and family members
  • Property, such as the family home or vacation house

Source: Rubin Law

Determining the Administration and Trustee

As previously mentioned, the trustee is the individual responsible for managing the trust. Make sure whoever you appoint as the trustee is responsible and well informed of your child’s needs. 

The trustee must follow guidelines for your child’s financial and medical wellbeing, and always act in their best interest.

Steps to Set Up a Special Needs Trust

  • Meet with a financial attorney, financial advisor, relevant doctors and family members to assess your child’s needs. Include the child as needed in the process. 
  • Determine the trustee.
  • Fund the trust. 
  • Distributions can start being made to cover expenses related to your child’s care. 

Read More: How to Set Up a Trust

Creating a trust is an investment in the future for both you and your child. Creating a trust and estate plan is primarily meant to protect your child if you pass away. However, organizing your finances and formalizing the methods which will protect your child is a valuable exercise even if the worst-case scenario doesn’t happen.

If you want to avoid the possibility of being unable to handle financial or personal affairs, you can explore legal options to offer your child more protection. 

Guardianships and conservatorships appoint an individual to act on your behalf if you’re incapacitated. A trusted individual can make sure your child is protected. 

A power of attorney (POA) provides similar legal benefits. A POA allows you to choose an agent to act on your behalf. 

Remember, these solutions should work to provide extra protection, not strip away power from your child.

Guardianship and Conservatorship

With a guardianship or conservatorship, a court appoints an individual to act on behalf of the incapacitated person. 

This legal protection is considered a guardianship if your child is a minor, or a conservatorship if the individual is your adult child or yourself. 

To obtain a guardianship or conservatorship, you’ll need court approval, and the process could be costly.  

Power of Attorney

A power of attorney (POA) is a document that allows someone else to act on your child’s behalf. 

You would choose someone to be an agent, and this person would act as your child’s caregiver and make important decisions. This role could be taken by a trusted family member. 

Your child must agree to the POA, otherwise the legal document won’t be valid. You don’t need to appear in court, but you do usually need your POA form signed in front of a notary.  

The Impact of Government Benefits

If you structure your estate plan accordingly, government benefits should not be affected.

A special needs trust (SNT) allows you to retain eligibility for a range of government benefits. 

According to Chaudhry, these benefits include, but aren’t limited to the following.

Eligible Government Benefits Under an SNT

Supplemental Security Income (SSI) 
A helpful program that provides a monthly stipend to individuals who have limited income and resources. It is specifically designed to support people who are disabled, blind or elderly. This financial assistance can make a significant difference in the beneficiaries’ lives by providing them with additional support to meet their basic needs.
Medicaid
A helpful program that provides health coverage to individuals who meet certain criteria. It is designed to assist low-income adults, children, pregnant women, elderly adults and people with disabilities.
Section 8 Housing 
A rental assistance program that is funded by the federal government and administered locally.

While an SNT is likely the best option, you could consider a pooled trust instead if you don’t qualify for an SNT. A pooled trust allows your child to remain eligible for government benefits too, such as Medicaid and SSI. 

“When you can’t set up a stand-alone SNT, or can’t serve as a trustee, sometimes a pooled trust is your best bet,” Chaudhry told Annuity.org.  

“A pooled trust is typically established by a nonprofit association. The nonprofit organization acts as a trustee and manages the pooled investments, but when it comes to distributions, they are made based on an individual beneficiary’s needs.”

“It may be a more cost-effective solution for those who cannot afford the setup and administration fees of an individual special needs trust.”

When preparing your legal documents, you can draft some yourself, such as your will. However, others, like a power of attorney, will likely require help from a professional. 

Most basic estate plans include the following legal documents:

Power of Attorney
A power of attorney allows someone else to make legal, financial or medical decisions on your behalf. This option can outline important details of your child’s health care plan

Will
Your will determines how you want to distribute your assets when you pass away.
Advance Directive
An advance directive refers to any document regarding future medical decision making.
Trust
A special needs trust specifically caters to your child’s needs. A pooled trust is another good option to consider.

Source: U.S. Bank 

How Often Should You Review Your Estate Plan?

You should review your estate plan at least every three to five years or when there is a major life event, according to Fidelity Investments. 

A major life event could entail a marriage, divorce, family member passing away or purchasing a new home. Or, if your child’s needs change, you should always update your estate plan as soon as possible. 

Read More: Wills vs. Trusts

Resources and Special Consideration

Preparing for your child’s future can be a heavy lift that you don’t have to face alone. There are nationwide and local resources to help you. 

Autism Speaks is a nationwide resource that can connect you with professionals to help you create an estate plan or provide emotional support.  

Autism Speaks has a resource guide to help you find: 

  • Advocacy, legal and financial aid
  • Advocates
  • Attorneys
  • Financial planners
  • Parent training 
  • Primary care doctors
  • Support groups
  • Local disability organizations

Preparing Your Child’s Estate Plan

The American College of Trust and Estate Counsel (ACTEC) has specific resources available to help you prepare your child’s estate plan. 

Topics covered in ACTEC’s estate plan guide include but aren’t limited to:

  • Should I serve as a trustee?  
  • Special needs trusts
  • Should I serve as a health care agent under a power of attorney (POA)?
  • Should I serve as an agent under a financial power of attorney (POA)?
  • Preparing for your initial estate planning meeting
  • How to talk with your family about estate planning

Getting professional advice is crucial to building a strong estate plan for your child’s future. 

While there are some parts of estate planning you can manage on your own, it’s best to hire an attorney or financial advisor to handle more complex matters.

Expert Contributors

  • Shann M. Chaudhry, Estate Planning and Asset Protection Attorney
  • Tina Mundelein, Board Member of the Down Syndrome Foundation of Florida
Please seek the advice of a qualified professional before making financial decisions.
Last Modified: May 29, 2024
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