Special Needs Estate Planning

Estate planning is incredibly important for all parents because it opens the door to difficult conversations and difficult choices they may have never considered. It provides the chance to determine who will raise your minor children if you can't, what money will be set aside or used for their upbringing, and even what money will support them as adults. Each of these choices can become even more difficult when the child has disabilities, especially if they are receiving some type of government assistance. 

Raising a child with physical or developmental disabilities can be challenging. Between running to and from specialist appointments, IEP meetings, occupational therapy, speech therapy, and caring for their basic needs, there is little time to take care of today's tasks, let alone plan for tomorrow. But, as you likely know, there are many legal and financial concerns that must be considered for the future, such as:

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

Protecting Your Child Starts with Naming Legal Guardians

Naming legal guardians is one of the first and most important steps a parent can take to ensure their child is raised by the people they want in the event of their unexpected death or incapacity. It is no secret that caring for a child with disabilities can be challenging. That is why you want to choose someone who will love and care for your child the way you would if you were not around for any reason.

When picking a legal guardian, we like to encourage parents to look beyond the obvious choices. Many times parents will choose a guardian simply because they have the most financial resources at their disposal. However, there are many other ways to ensure your child has enough financial resources to last a lifetime. Choosing a guardian based on financial status should not be your primary concern. Instead, consider the candidates whose values and outlook on life are similar to your own. You will also want to choose someone who will be committed to looking after your child for life, as many children with disabilities require supervision and support well into their adult years. Here are some other questions to ask when choosing a legal guardian:

  • Does the potential guardian have a similar parenting style to yours?
  • Is your child already comfortable with this person?
  • Is the potential guardian willing to take on the responsibility?
  • Will they be emotionally able to care for your child(ren) after your death?

Once you have decided who to name as trusted guardians, you will need to work with an estate planning lawyer to legally document your wishes. You should leave a copy of your plan with your chosen caregivers, your child’s school, babysitters, and any other concerned party in the event something happens to you and/or your spouse.


Special needs child with guardian

Don’t Forget to Name Short-Term Guardians

Situations can arise where a parent is temporarily and suddenly unable to care for a child. A car accident or other emergency could require the need for a guardian on very short notice. Unfortunately, if the parent hasn’t planned for this contingency, things can go from bad to worse pretty quickly. That’s because emergency personnel can place your child with disabilities into the care of Child Protective Services for the duration of the emergency, or until the long-term guardian can take custody. This can happen even if you have family members or friends who are willing and able to help! The reason for this is simple: the authorities can not leave your child in the custody of another adult without your explicit permission. If you are incapacitated and can not give this permission, Child Protective Services will likely have to get involved until a judge can give a final “okay.”

It’s not hard to imagine the anxiety, terror, and pain this type of arrangement could cause for your child.

A better solution is to work with your attorney to designate a temporary legal guardian. This is someone who you are essentially “pre-authorizing” to help your child in a short-term situation so that Child Protective Services does not have to get involved.

Starting The Process of Guardianship Before Your Child Turns 18

Naming legal guardians is not to be confused with the process of adult guardianship that you will likely have to go through when your child turns 18. Remember that once your child becomes a legal adult, you can no longer make decisions for him or her. This is true even if your child has disabilities and can not manage his or her own affairs. In order to retain your decision-making rights to help your child, you will need to go through a separate process of setting up a guardianship with the local courts.

During this process, a judge must give someone (usually the parents) legal authority to continue to make medical and financial decisions for the young adult if it is determined that he or she is mentally or physically unable to carry out such responsibilities. At this time, the parents can also name interested parties who can serve as co-guardians or successor guardians for the adult with disabilities should the parent pass away or become unable to serve. Your attorney will walk you through the process of guardianship and help your family prepare for this necessary court procedure prior to your son or daughter’s 18th birthday.

Pros and Cons of Guardianship for Young Adults with Special Needs

Again, guardianship is an important process that allows parents to have legal and financial authority over their child when their parental authority would otherwise stop. However, before beginning a petition for legal guardianship, you should consider the following pros and cons of going through this court proceeding.

1. Your child loses a great deal of freedom. If you gain guardianship, your child loses the freedoms he or she would have as an adult. The child will lose the right to handle his or her own finances, make healthcare decisions, choose residency, or make any other decision that the court has given the guardian power to decide. For young adults who are high-functioning and could possibly lead an independent life, this loss of freedom is a very real concern that families must consider.

2. You have a great deal of responsibility. Your responsibility may be an extension of the things you did for your child when he or she was young. As a guardian, you have a responsibility to care for whatever the court has entrusted to you, and failing to do so could bring legal consequences. If you’re responsible for your adult child’s finances and you mishandle them or use his or her SSI fraudulently, you may not only lose guardianship but could be liable for civil damages or be criminally charged.

3. Your rights could be limited. Unlike guardianship of a minor child, guardians only gain authority over the things the courts give them authority over, and nothing the petitioner doesn’t ask for. Therefore, if a parent only has medical guardianship, for example, and not financial guardianship, that parent cannot make financial decisions on the child’s behalf. Likewise, your guardianship doesn’t allow you to keep your child from engaging in adult behaviors you would prefer they didn’t. They’re free to do whatever they wish. 

4. Your guardianship isn’t transferrable and ends with you. Guardianship either ends when you die or the court ends it. You can’t pass on guardianship of your child with special needs to a spouse or to a surviving adult child. They can petition the court and go through the same guardianship process – and expense. 

Alternatives to Guardianship

If your child is high-functioning, you may be able to utilize legal alternatives that will help you continue to make decisions for your now-adult without terminating his or her rights with the courts. One strategy is to create a Special Needs Trust, also referred to as a Supplemental Needs Trust, to handle financial affairs. The trustee will use the Trust to pay for the child’s expenses.

If your young adult has the legal capacity to sign documents, he or she can also name the parent as Healthcare Agent and Power of Attorney so the parent can help the child make financial and medical decisions whenever it’s deemed necessary. Many of these alternatives depend on the physical and mental needs of the child, and must be evaluated carefully by your legal and medical team.

Protect Your Child’s Financial Future by Setting Up a Special Needs Trust 

If you have a family member with special needs, you may find that the child, sibling, parent, spouse, or loved one in question may be entitled to valuable government benefits, such as Social Security or Medicaid, either now or in the future. However, most of these benefits are available only to those of very limited means.

As a result, you may find yourself at a crossroads. You could leave a substantial inheritance to this person, but he or she will be disqualified from receiving government benefits that could be crucial to the care they need. On the other hand, you may not want to have to disinherit him or her in order to preserve these benefits.

Fortunately, a Special Needs Trust will keep you from having to make this wrenching decision. A special needs planning attorney understands the ramifications of inheritance when it comes to eligibility for government assistance. Planning tools such as a Special Needs Trust must be set up in a very particular way in order to meet government standards and allow for the continuation of other benefits.

The specific purpose of a special needs trust is to supplement government benefits. This means that a special needs trust must only provide benefits above and beyond what the beneficiary or disabled person receives from any government or private agency.  Due to the intricacies of qualifying for these benefits, it is critical that the trustee of the trust has expertise in the proper administration of special needs trusts.

The trust should not duplicate any government-provided services. Nor should the beneficiary have any resemblance of ownership of the trust assets. Otherwise, the government could attempt to seize the trust assets for repayment of services rendered or decide that the beneficiary doesn't qualify for future benefits. 

To accomplish this, you should give the trustee complete control over the distribution of assets and any income they generate. The beneficiary cannot be able to demand any principal or interest from the trust.

Please give very careful consideration to your choice for trustee. Of course, you or your family will continue to provide for this person while you are alive and able to do so. However, someone else should be prepared to assume this responsibility following your death or incapacity.

However, special needs planning is not just about maintaining government support. It also protects the disabled individual from lawsuits and other debts, as the trust cannot be seized in order to pay these. This protects the trust and the individual who relies upon it for his or her ongoing care.

photo of two man and one woman standing near tree

Avoiding Mistakes in Special Needs Planning

Unfortunately, there are many misconceptions when it comes to special needs planning. Even well-meaning caregivers and service organizations can misinterpret issues related to disability planning and give bad advice. Below are just a few mistakes we see families and caregivers make on a regular basis that you should be careful to avoid.

Costly Mistake #1: Disinheriting your child to preserve government benefits

As previously mentioned, many children and adults with disabilities rely on government benefits such as SSI and Medicaid for their basic needs (including health insurance). There are some well-meaning people and attorneys who would suggest that you disinherit your child to protect his or her benefits. But, government benefits provide only enough to secure food, clothing, and shelter. What happens if you become incapacitated or pass away? Will your child be able to maintain the life that you have so carefully crafted for him or her on these limited resources alone? Probably not. If your child is likely to require government assistance to meet his or her basic needs, you should consider establishing a Special Needs Trust. Again, if done properly, a Special Needs Trust can protect your child’s public benefits and help him or her maintain a secure lifestyle even after you are no longer able to provide support.

Costly Mistake #2: Procrastination.

It is critical for all parents of minor children to have an estate plan. You just never know when you might become incapacitated or pass away. But, it is even more important for parents of children with special needs to plan ahead. Your child is counting on you to have a safety net in place that will take him or her securely through all of life’s transitions, including the time when mom or dad is no longer there to provide financial support or physical care. Don’t procrastinate.

Costly Mistake #3: Creating a “Do-It-Yourself” or Online Special Needs Trust.

Special Needs Trusts should be created by a lawyer who focuses on this area of the law. That is because Special Needs Trusts are subject to both federal and state laws, and the laws of each state can vary. Furthermore, it’s easy to make mistakes using online “Do-It-Yourself” Trusts that could jeopardize benefits or fail to account for your child’s unique needs. One wrong answer on a “fill-in-the-blank” form could blow up your entire plan. Before you go this route, at least speak to an attorney to ensure you are covering all the right bases. 

How can I get started planning for my child?

Planning for a child with disabilities is an extremely important and time-sensitive task. Your child is counting on you to create a plan that not only protects him or her now, but well after you are gone. Special needs planning makes that a possibility and gives you some level of control over the future. By planning now, you can have the peace of mind knowing everything will be taken care of, no matter what happens. Call our office at 919-533-4176 or visit our website to schedule a free needs assessment call to get started today.