With Kelly Piacenti, MA, ChSNC® and Jerry Hulick, CLU®, ChFC®, ChSNCTM, CLTC

Planning for the future of a loved one with Fragile X or other special needs can feel overwhelming. It’s normal to have questions, feel uncertain, or struggle with the thought of one day not being there to care for them. Allowing yourself space to pause and seek support is part of the process. Creating a plan is a meaningful and loving step toward securing the best possible future for your loved one.

In their presentation, Kelly and Jerry shared common financial decisions that, while well-intentioned, can unintentionally affect a loved one’s access to future benefits and supports. They explained the impact of these decisions and offered strategies to help correct them. Most importantly, they stressed the value of working with professionals who understand the complexities of special needs planning. The right guidance can help avoid costly mistakes and provide lasting peace of mind.

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Top Financial Mistakes to Avoid for Special Needs Dependents

The webinar was a presentation followed by a Q&A session. Kelly and Jerry shared common pitfalls that can jeopardize long-term care and benefits for special needs individuals. While every plan should be tailored, avoiding common mistakes can make a powerful difference.

Key takeaways from the webinar:

The biggest mistake is not planning at all. Without a plan in place, someone who does not know your loved one or their needs, possibly even a court, could be left to make decisions on their behalf. Delaying legal and financial planning puts their future stability and support at risk.

Every plan should reflect the individual’s unique needs and goals. Thoughtful planning should be tailored to the person’s lifestyle, independence, and long-term support needs.

Prioritize completing a Letter of Intent. While not legally binding, it can serve as a roadmap for your loved one’s future. By outlining preferences, aspirations, and important considerations, the Letter of Intent ensures that your loved one’s needs and desires are understood and respected, even in your absence. Example: MassMutual Letter of Intent

Be mindful of well-intended but risky financial decisions. This includes naming the individual as a direct beneficiary on life insurance or retirement accounts, savings bonds, or making gifts without coordinating with the overall plan.

Avoid leaving assets directly to the individual. Giving money or property directly to a person with special needs may disqualify them from essential government benefits. A Special Needs Trust (SNT) can preserve these resources while maintaining eligibility. There are several types:

  • First-Party (Self-Settled) Trusts: Funded with the beneficiary’s own assets, such as from a legal settlement or inheritance. These are subject to Medicaid payback after death.
  • Third-Party Trusts: Funded by others, such as family members, and not subject to Medicaid payback.
  • Pooled Trusts: Managed by nonprofit organizations, combining funds from multiple individuals for investment while maintaining separate accounts. Available in both first- and third-party formats.

Consider an ABLE account as a complementary tool. ABLE (Achieving a Better Life Experience) accounts allow individuals with disabilities to save money without affecting their eligibility for SSI, Medicaid, and other public benefits. Funds in an ABLE account can be used for qualified disability-related expenses such as housing, education, and transportation. While ABLE accounts have contribution limits and other restrictions, they can be a valuable addition to a broader financial plan.

Applying for Government Benefits such as SSI, Medicaid, or other government programs can be complex. Before submitting an application, make sure any known errors or missing information are corrected to avoid unnecessary delays. Denials do occur, and if denied, request a reconsideration; it’s often faster than a formal appeal, which can take months or even years.

Planning ahead may feel overwhelming, but it is one of the most meaningful ways to protect your loved one’s future. With the right guidance and resources, you can create a plan that brings peace of mind and lasting support for the years to come.

Learn More About the Presenters

Kelly Piacenti, MA, CHSNC® – specialcare@massmutual.com

Kelly Piacenti is responsible for the MassMutual SpecialCare program which includes nearly five hundred Special Care Planners*. She also oversees partnerships between MassMutual and the largest special needs non-profit organizations across the country; including The Arc, Autism Society, Huntington’s Disease Society of America, National Down Syndrome Congress (NDSC), Tuberous Sclerosis Alliance, and United Cerebral Palsy (UCP).

Jerry Hulick, CLU®, ChFC®, ChSNCTM, CLTC

Jerry has been active in the financial services industry for over 40 years. Jerry retired as General Agent of The Washington Group of MassMutual in 2004. Realizing that families with special needs members face unique financial challenges, he started The Washington Group Special Care Planning Team. The Washington Group Special Care Planning Team’s mission is to help make a positive difference in the lives of individuals with special needs, their caregivers, and other family members. Their knowledgeable and dedicated special needs planners assist families with developing valuable financial strategies and creating strategic financial solutions that integrate with government programs. The Special Care Planning Team has developed a unique network of professionals within the special needs community. This devoted network assists families, not only with their financial planning, but also provides a wide range of expertise to fit the diverse concerns of individuals with special needs and their families.

*The Special Care Planner title is used by financial professionals with Massachusetts Mutual Life Insurance Company (MassMutual) who have received advanced training and information in estate and tax planning concepts, special needs trusts, government programs, and the emotional dynamics of working with people with disabilities and other special needs.

The information provided is not written or intended as specific tax or legal advice. MassMutual and its representatives are not authorized to give tax or legal advice. Individuals are encouraged to seek advice from their own tax or legal counsel. Individuals involved in the estate planning process should work with an estate planning team, including their own personal legal or tax counsel.

Additional Resources

Below are the links to external resources that were referenced during the webinar. These resources are provided as options for your consideration. They do not constitute a recommendation or endorsement.

about
Missy Zolecki, Director, Community Empowerment

Missy Zolecki
Missy joined NFXF team in 2018 after being an active volunteer since 2010. Missy organized several fundraisers and educational workshops while serving in her volunteer role. Missy is the mother of three children. Her eldest son, Matt, lives with Fragile X syndrome. Prior to joining the NFXF team, Missy had worked as a nurse for more than 20 years. She enjoys traveling and spending time with family and friends.