Cure SMA Recommends Financial Planning Strategies for Parents of Children With SMA


Suggestions from Mary Anne Ehlert, founder and president, Protected Tomorrows, include getting involved with the community and making the most of benefits and programs.

This content is courtesy of Cure SMA. To view the original post, click here.

When you first learned that you or your child had SMA [spinal muscular atrophy], you probably began analyzing your home life, your or your child’s education, and other immediate concerns. In time, you realized that the needs would continue to evolve. How would you pay for medical expenses that insurance did not cover? What types of programs would you or your child qualify for as an adult? Where would you or your child live if something happened to the primary caretaker of the person with SMA?

There are so many things to take into consideration that you may feel overwhelmed. You need a solid plan to help you make sense of a complex situation. Here are some reasons why having a plan is not only a good idea but is also necessary.

Brings objectivity to a very emotional topic: A plan helps you look at a situation from a “big picture” standpoint. A traditional plan will look at the hard data, but planning with a disability will, more importantly, reflect the story beyond the numbers and how all those pieces fit together to make a whole. The first step of every plan is to create a vision of what you want for you or your child and write down what keeps you awake at night. Knowing those two things can make the difference between a plan consisting of only numbers and graphs and a plan that creates a map to a successful future.

Identifies options with one step at a time: A great plan will include more than one option and provide sound direction. It should be broken down into doable steps. We know that life can change in a moment and we should consider all the options to be considered. As you learn more, adjust the plan.

Focuses on legal options: It is essential to have the appropriate legal documents written by a legal source. You may need a special needs trust or even a payback trust. For parents of a child with a disability, you also need to make sure your estate plan is solid. If you are not prepared, then your child’s care may suffer as a consequence. Special needs attorneys not only give legal advice, but they excel at providing a practical view of how an appropriately written trust will factor into your plan. A poorly written trust can jeopardize the individual with SMA’s eligibility for benefits. First step is to find the right attorney.

Maximizes benefits and programs: A special needs plan has a benefits section that focuses on the myriad government and local benefits programs you or your child may be qualified to receive. This specialized area plays an essential role in your plan. Understand the limits on your or your child’s assets and income when the person with SMA turns 18 to obtain SSI and Medicaid. For parents, understand how your own social security may impact your child’s benefits into the future and possibly for their lifetime. There is a component of your benefits that may allow your child to obtain Disabled Adult Child (DAC) benefits that would also provide Medicare in their future. Obtain your own social security record to assist you in this portion of the plan.

Understands that transition is the key: Once a person with SMA reaches adulthood, benefits can, and will, change. A plan will help guide you through this process utilizing not only financial options, but program options to make the transition as easy as possible for all parties involved. Participate in groups that will help you find the future educational and residential options available to the individual with SMA.

Remains fluid and flexible with your own financial plan: Unlike a traditional financial plan, where graphs and numbers are followed, your own financial plan needs to address the many changes you or your child will go through, as well as your own planning needs. When you retire, your own plan needs to include the future costs of your child. Work with a financial professional who understands these concepts. Your investment solutions and insurance solutions need a long-term horizon. You cannot take chances that nothing will be left to fund the special needs trust.

Utilizes the ABLE Account as a savings plan: The newest planning tool in our world of disability planning is the ABLE account. This expands the ability to save for your child tax free, and the funds will not count against your child for future benefits.

Gets involved with the community: Become an advocate for yourself or your child. A benefit of being an advocate or activist in the SMA community is your newly gained knowledge of non-financial programs, support groups, recreational opportunities, and many other resources your family might be interested in.

A financial plan for a person with SMA is an essential part of providing the future care for this individual. Every parent wants to know that their children will be safe and happy when they are not able to be there, leading a life as independently as they are able to, and having lives of their own. These plans that focus on special needs can provide objectivity, guidance, knowledge, and, most importantly, empathy to your family. The plan will help make your dreams, or your dreams for your child, a reality.

Mary Anne Ehlert is the founder and president of Protected Tomorrows, Inc., the leader in enhancing the lives of families with members who have special needs. By guiding families through its comprehensive, proprietary planning process, Protected Tomorrows helps ensure the well-being of a loved one by creating a Future Care PlanTM. Through their work with clients and the family’s advisors, and alongside of other advocates and legislators, Protected Tomorrows addresses many concerns of families with special needs such as: future care funding, government benefits, legal considerations, residential options, employment opportunities, recreational choices, education options and family communication.

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