Planning to Protect Those with Down Syndrome

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Reviewed by Jason Neufeld

Do you have a loved one with Down syndrome? Have you started any estate planning for yourself and for your loved one with Down Syndrome? Estate planning is critical for all Floridians. It is, however, even more critical, if you have a loved one with Down syndrome. When you have a loved one with Down syndrome it can result in both mental and physical challenges for this individual. Even though there are similarities in the diagnosis for impacted individuals, often each person has different strengths and weaknesses.

For your loved one with Down syndrome you probably serve in the roles of both advocate and caregiver. Do you find that as the advocate and caregiver you are often in charge of many tasks each day including, but not limited to:

  • Personal caregiving
  • Advocating and ensuring their rights are protected
  • Ensuring they have access to education
  • Obtaining government benefits
  • Finding doctors and specialists
  • Managing prescription medications
  • Maintaining a stable home environment
  • Helping them interact with both family members and the outside world
  • Protecting them from harm
  • Ensuring they are not take advantage of

Thinking about all this responsibility you have for your loved one with Down syndrome, have you given any thought to a time when you are no longer here to provide for him or her? It can be a terrifying thought.

This is why estate planning is so important. With a Florida estate plan in place you can be sure that your loved one is protected should there come a time when you are no longer here to care for him or her. Your comprehensive estate plan will allow you to choose who your successor is for your loved one’s person as well as planning for his or her financial stability. By planning forward with a Florida estate planning attorney experienced in this area, you can work together to create a care team that will act in your place when you are no longer here.

The estate plan you and your attorney create for your loved one with Down syndrome will probably be a plan that includes special needs planning. That is why estate planning in this area includes:

  • A special needs trust
  • Making choices regarding future healthcare decision makers
  • Planning for their financial security
  • Transition plans to ensure someone can access government benefits

In addition, you should make a detailed list of instructions on what it is you do each and every day. For many loved ones of family members with Down syndrome they have fought significant battles for years and they know both what to do and what not to do when it comes to caring for their loved one. So, it is important for you to provide instructions for future advocates so they are not at risk of not knowing what to do in specific situations.

Finally, we highly recommend you meet with a Florida estate planning attorney who knows how to work with you to create a special needs trust for your loved one with Down syndrome. Your attorney will have the expertise to talk to you about what it means to create a special needs trust for your loved one. Be sure to share your concerns with your Florida estate attorney as well as your goals for the future.

We know this can be a difficult future to plan for and are here to help you. The Academy of Florida Elder Law Attorneys (AFELA) is the pre-eminent organization of Florida elder law attorneys providing advocacy, education and action on behalf of seniors and people with disabilities. We encourage you to contact one of our attorneys in your area using our Find a Lawyer website for assistance.