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Securing a future for children with disabilities

Securing a future for children with disabilities

Families of youngsters with life-impacting disabilities, disorders or conditions bear emotional stress in addition to worries about a child’s long-term care and financial security. FIU offers help.

February 22, 2024 at 9:00am

Parents of children with life-impacting learning disabilities, neurological or developmental disorders and/or physical conditions – face myriad challenges associated with raising them. Aside from the emotional toll, costs for things such as therapies and the hiring of additional care professionals, for example, can often run into the thousands of dollars. And worries for the long-term security of a child continue even after he or she reaches adulthood.

FIU Embrace | Center for Advancing Inclusive Communities serves families supporting a person with a developmental disability such as Down syndrome, autism spectrum disorder and others. The center offers training to young adults to help them live independently and acquire employment.

The center also provides training to parents and professionals on topics such as guardianship, supported decision-making, social security benefits and more to assist in navigating the legal and financial aspects of caring for an adult with a developmental disability and planning for his or her long-term future.

Gina Chevallier (pictured) is an attorney and 2010 alumna of FIU Law who concentrates her practice in estate planning, probate and guardianship. She is in private practice, and FIU Embrace often refers her to families seeking legal guidance that includes making important decisions and completing required documents for the good of their children.

Chevallier provides some basic information here for parents who are grappling not just with immediate worries but looking to establish a strong footing that will support their child well into adulthood.

Children with developmental disabilities who transition to adulthood typically continue to need some kind of help with daily life. How should parents think about planning for such an eventuality, understanding that personal as well as financial concerns will persist for decades to come?
Gina Chevallier: I suggest parents start the process as early as possible, when the child is still a minor, and consider a team approach. They should speak with an estate planning attorney who’s knowledgeable about planning for such individuals and can provide legal as well as financial planning guidance and then discuss a tailored plan that suits the child’s unique needs.

Parents who have a financial advisor should make sure that he or she is aware of what the estate planning attorney is doing and vice versa. And all parents should seek the input of their social worker [agencies and hospitals can assist with securing the help of a social worker], who is often the person most aware of changes within the Medicare and Medicaid programs and the other government assistance programs for which individuals with disabilities qualify [among them Social Security disability income, which does not require that the recipient has paid into the program and supplemental security income, another federal program.

Just as choosing a potential guardian for any child, whether or not they have a disability, parents should consider somebody who would have the interest of this child’s wellbeing at the forefront. But especially in the case of a child with a disability, it’s most important to name someone who has patience, is compassionate and who understands the disability. And while not legally required, parents should have a conversation with that person in advance of naming them in legal documents to ensure their agreement.

You mentioned financial planning. What does that entail?
Sometimes families will create what is called a special needs trust for a family member, and everybody – aunts, uncles, cousins, whoever wants to - can contribute. The goal of that, or any trust established for the child, is really to pay for things that are outside of what Medicaid would provide. We’re talking about living expenses and, for example, the salary for a helper to live with the individual as he or she ages.

How can parents prepare for not just the expenses but the decision-making around the things you just mentioned?
At the age of 18, a person with a disability might well require the kind of daily assistance they did as a minor. Additionally, they will need help with decisions about healthcare as well as housing in addition to their participation in various government assistance programs.

A designated guardian would have some authority over that. Parents can serve as guardians of their adult children and continue making many of the decisions for them, although they might still have to go through a court process to be appointed the legal guardian upon their child’s reaching the age of majority.

There are several types of guardianships in Florida, and it’s important to understand the differences. A plenary guardianship means that all the rights are taken away from the individual, and a limited guardianship means some but not all rights are taken away. The choice of guardianship type has a lot to do with an individual’s ability. Florida also offers a guardian advocacy option for adult children with certain diagnoses, including autism and downs syndrome, so long as the diagnosis was made prior to the child reaching the age of 18. This is reserved for adult children who need assistance with some, but not all, activities of daily living and decision making.

Does the guardian oversee the finances paid out of any trust that might have been established for the individual with a disability?
The administrator of the trust, known as the trustee, can be the same person as the guardian, or it can be someone else. While the parents are alive, they might play both roles. After their deaths, whoever they designated as a guardian may take on the duties of a guardian, but a separate designated trustee might administer the trust. It depends.

Who should best serve in a trustee role once the parents are deceased?
The trustee can be someone that the parents have selected and named in their estate plan. The person should be experienced with managing the money in a trust and the legal aspects of that. Whoever is chosen by the parents should either be knowledgeable in this area or have the ability to gain that knowledge on their own or through seeking out the proper resources, like going to see the appropriate attorneys, hiring someone that can administer the accounting aspects, whatever it may be. They should not have a criminal background, as this could impede their appointment as guardian, even if it was something that occurred in the very distant past.

And if there is no one the parents deem ideal for the role – and just as with a potential guardian, discussions with the potential trustee should take place before anyone is named as a potential trustee – there are organizations that will act as trustees. In Florida, there are nonprofits that offer what are called pooled trust programs. Corporate trustees are also an option, although they require asset minimums. In either of these two, pooled or corporate, fees must be paid to the trustee.

Finally, any advice for how parents might best move forward with all of these tasks and plans while still very much engaged in the emotional day-to-day of helping their child through daily tasks and other important activities such as doctor visits and therapy sessions?
I would advise parents to educate themselves as much as possible on the options available. FIU Embrace offers many informative Zoom-friendly seminars for parents trying to meet the demands of caring for their children on a variety of topics geared toward providing the tools necessary to properly prepare for your child’s future. Most attorneys and financial advisors offer some type of video conferencing consultations that will allow parents to obtain legal and financial guidance. Take advantage of these. Our firm, as many others, will offer a complimentary 30 minute consultation.



“In the Embrace” is a podcast focused on discussing insights on disabilities with two goals: to bring awareness of the lived experiences of realities of individuals with intellectual and developmental disabilities and their allies; and to offer live-affirming, practical approaches for some of the more common challenges they may face. Additionally, the program aims to shine a light on advances, support mechanisms and policies related to individuals with disabilities.

Guests will include people with disabilities, parents, caregivers and professionals. Nicole Attong, serves as host of the first episode, which discusses the grief often experienced by parents of children with disabilities. She is the executive director of the FIU Embrace Center for Advancing Inclusive Communities, which through research, innovative programming, professional skills development and community engagement aims to empower differently persons to live at their fullest potential.

The first episode focuses on the grief often experienced by parents of children with disabilities. Her guest is Dr. Yolangel Hernandez Suarez, a faculty administrator and senior associate dean at the Wertheim College of Medicine and herself the parent of twins who have development disabilities.

Episodes will be made available at the FIU Embrace YouTube Channel

For more information and resources, visit FIU Embrace.