When I was not quite 40 I was diagnosed with multiple sclerosis and my life was permanently altered. It has taken 15 years of battling – a divorce, unemployment, bankruptcy and foreclosure, not to mention dealing with the advancing disease itself – but today I feel like I have taken back control of my life.
When a disease like MS strikes, particularly for those who experience advanced, crippling symptoms and who – like me – require daily living assistance, life can become a stress-inducing chore.
While there are the day-to-day challenges of managing a life turned upside down, the most difficult challenge is often the enormous financial burden such a disease can place on those it impacts.
Naturally I fretted about the potential this disease had to literally bankrupt me and my family. But a little-known healthcare and financial planning tool called a Special Needs Trust has made such fretting disappear.
A Special Needs Trust enables the parent or guardian of a disabled child to establish a trust for that child’s care, without the gift impacting the child’s eligibility for a Personal Care Assistance (PCA) Medicaid Waiver (which provides support for people like me with disabilities).
I was introduced to this tool by the disability planning department of Czepiga Daly Pope & Perri. The guidance that the firm provided to me has been a Godsend for me.
My Mom, who herself lives in a nursing facility in Massachusetts, needed to relinquish her assets to qualify for Mass Health. Establishing the Special Needs Trust saved the day for both of us: Her gift to me allowed her to qualify for Mass Health, while its placement in the trust allowed me to remain eligible for the PCA Medicaid program (I have three aides helping me thanks to the program, which is wonderful).
Because of Medicaid’s strict financial eligibility requirements, I would not have been able to accept my Mom’s gift and stay in the PCA program without this trust. I can now purchase things that Medicaid doesn’t pay for, like furniture, a new walker – even the puppy I recently got.
My best friend Amie is my trustee. While I have no access to the money myself, I can tell Amie what I need and she’ll pay for it.
My story of independence from at least some of the potential burdens of MS is well-known where I live, Ojakian Commons residential community for people with special needs.
My story is so popular, in fact, the MS Society asked me to speak at Ojakian’s ribbon-cutting ceremony last fall. Governor Dannel Malloy and other dignitaries were there. Afterward, I visited with Claudia and Amy Sereday, a paralegal, to show them the video of the ceremony.
We all cried together.
While life can sometimes be unfair, today I am a firm believer that those of us who persevere will find a way to triumph. I hope my story inspires others who face similar life-altering circumstances to triumph, as well.
Life is good.
(Amanda Lustig lives with multiple sclerosis and resides at Simsbury’s Ojakian Commons residence for people with special needs. She hopes her story inspires those in her community facing similar trying circumstances to take back control of their lives.)