EPISODE 9 – How to memorialize an adult child through a special needs trusts – May 1, 2022

Is it too late to memorialize a loved one through a special needs trust? Can an adult, living with a disability, be a beneficiary of a new special needs trust? Listen to Bart share stories and suggestions as parents age yet continue to love and care for their adult children, through the use of special needs trusts.


Greetings from our Middle Tennessee studio…and welcome to today’s Vista Points podcast, “Choose Your Path”, where the Vista Points’ staff are committed to improving the quality of life for those of any age who are living with a disability. 

Vista Points serves the community by providing professional trustee services and education about special needs trusts. This nonprofit organization partners with a variety of nonprofit and for-profit entities to better the lives of those living with physical, mental or intellectual disabilities.

I’m Bart, your podcast host. In previous episodes, we introduced special needs trusts, what they are, stories of the people and relationships involved and how special needs trusts impacted their lives. If you’ve been following our previous posts, you understand the basics of  a special needs trust. Clearly you want to learn more since you are listening now. Today, I will talk about memorializing a loved one using a special needs trust.

You may already know enough to know that you want to do this, but you may think it’s too late. After all, you have lived your life, and you have figured things out for your adult child, who is living with a disability. If this is the case, I applaud you. You have accomplished more than most can ever comprehend. If you think there is more to learn, that may help you plan for the care of your adult child, after you can no longer care for the child, please sit back and listen to our podcast. 

Allow me to offer an idea about how to honor your adult child, who’s living with a disability, after you have passed. One way is to establish a special needs trust now to be funded after you’ve passed. Nothing can or will ever replace your love, physical presence, thoughtfulness, yet a special needs trust is an option which provides all three of those things for your child. It will allow your child to grieve for your loss without worry or fear of losing his or her government benefits, and afterwards, it will allow your child to live a more predictably stable financial future.

The first question most parents ask is if the adult child is eligible for a special needs trust. That’s a good question. The short answer is “yes”, if he or she is living  with a disability. The long answer addresses each kind of disability.

Now, your daughter may have been born with an illness, such as cerebral palsy or Down’s Syndrome. Perhaps, your teenage son was permanently injured when he dove into a shallow end of a pool; or your college age son was in a car accident which paralyzed him.

Now, God forbid any of these things happen. But, each of these young people can receive the benefits of having a special needs trust at any point in their life. So, too, are those who are diagnosed with illness later in life such as bipolar disorder, a mental illness, Multiple Sclerosis,  or COPD, that’s Chronic Obstructive Pulmonary Disease.

There’s also progressive and chronic disorders which cause a steady decline in the health of your loved one, such as Parkinson’s Disease, heart conditions, diabetes, or even those in the brain disorder category like dementia, such as Alzheimer’s.

I am sure you’re thinking,“Wait. Diabetes? Or, a heart condition? So many people are diagnosed with these.” Yes, I agree with you. This is why we are here to educate and spread the word. Disabilities do not discriminate, and neither do special needs trusts.

Then, to answer your question… the answer is  “yes”. If your adult child has more than one of these disabilities, or one of these disabilities, you can establish a special needs trust for him or her. Your adult child will be known, in trust terms, as the beneficiary. For example, if you are an 80-year old parent of an adult child who has been diagnosed with one of these conditions, you can include the establishment or the additional deposit into the active special needs trust, in your will. Protect and provide for your adult child in your passing. He or she will be able to grieve your death appropriately and honor you in life.

A few years ago, Vista Points had a client who raised and cared for her daughter, who was 34 years old. The daughter had intellectual disabilities. She operated on approximately a 14 year old level. She would never be able to live on her own. She trusted everyone and was ready and willing to give everything she had to help (when) someone else, without even thought of her own well-being.

The mother was in her 80’s. She did not tell her daughter that she had cancer. She was concerned as to where her daughter would live after she passed, who’s gonna care for her daughter. The mother met with an attorney who suggested adding a special needs trust to her will for any inheritance the daughter may receive.

The woman died a few short weeks later after the special needs trust was added to her will. The daughter did not want to leave her home – the only place she knew and felt safe, but she had to do so. The house was sold. The proceeds of the house were deposited into the daughter’s special needs trust. The trustee hired a case manager to find the young woman housing in a group home. She also set up counseling sessions for the young woman. As the young woman became more comfortable in her group home, she was able to go to movies with the rest of the group, occasionally go out to eat, even took a painting class.

The young woman adapted quickly to the group home. She was happy.  She had friends her own age. Her mother gave her daughter a great blessing – the special needs trust. This young woman will live a good quality of life for many years to come, thanks to her mother’s generosity.

How can establishing a special needs trust become a reality for you? First and foremost, the adult child does not need to currently be receiving government benefits. After all, many people with diabetes or heart conditions live happy, healthy and financially predictable lives! Right? Yet, you and I know the consequences from years of not taking care of oneself. We also know all too well how the unexpected comes up and happens. What happens when your now-sixty-year-old son slips into a diabetic coma or your now-sixty-year-old daughter has a stroke? 

Let the wisdom you’ve earned over the years lead your decision making. You have always known – and continue to know – what is best for your child.

I hope my next story will help to explain the importance of how a special needs trust can benefit your child. A mother and father had a daughter with Downs Syndrome. The mother always said she would care for her daughter until she died. The father, through the years, tried to talk his wife into placing their daughter in a group home. He wanted their daughter to live a full life, have friends, travel and be as independent as possible. The mother would not agree. She wanted her daughter to remain in the home with her.

Without the wife’s knowledge, the husband had a will drafted that included a special needs trust for their daughter. There were specific guidelines the father wanted followed upon his death. The most crucial guideline was that his daughter must move into a group home at the time of his death. 

The mother, his wife, was distraught. She did not want to lose her daughter along with her husband. She met with the attorney to see if there was any way she could keep the daughter at home. The attorney encouraged the mother to visit some group homes nearby and farther away. He told her this may be a very good move for the daughter and for her. 

Over the course of several months, the mother visited group homes and realized that they were operated by very warm and loving people. The homes permitted the residents to visit family, stay overnight. They had daily activities. The residents were well taken care of. They learned to manage their own personal hygiene. They lived good qualities of life. 

The mother did find a great home for her daughter. Although the daughter was afraid of the change, she made the move. It was much harder on the mother emotionally than it was on the daughter.  

On the first day, when the daughter arrived to the group home, the staff had a Welcome party. The daughter never looked back. She adjusted quickly to her new living arrangement. She enjoyed getting new furniture to furnish her room. She took up miniature golf on the course the group home had on the property.

As the mother adjusted to having an empty house, she also found new things to do. She joined a book club, had lunch with friends once a week, joined the YMCA, took exercise classes. She even learned to swim.

Each month the mother and daughter have a “girls weekend”. They go out to eat, go to a movie, stay up to the wee hours of the morning talking, eat a scoop of ice cream at midnight, just like they always used to do.

Are they happy now? The answer is a resounding “YES”.  Both mother and daughter have grown as people. The daughter has matured. She can now do so many things for herself and on her own. The mother is impressed with her progress. The mother is less “hovering”. She understands how happy her daughter is. The mother enjoys her newfound independence also. She doesn’t worry about her daughter because she knows she is in good hands. They’re both happy. 

If your adult child who’s living with a physical, mental or intellectual disability has not yet received government benefits, know that a special needs trust will be a resource for him or her to help with day-to-day expenses, healthcare and more. You will want to consult an attorney about which of the three types of special needs trust is best to establish for your child. And, of course, also talk with your attorney about updating your will. Speak with your financial advisors so they can help your money to grow. 

Now, this probably stuns a lot of people. And, I understand that. That’s why I am here, to walk with you through the process.

Now that we’ve addressed your first question, you may be ready to move on to your next questions. I encourage you to listen to prior podcast episodes which we each broadly answer fundamental special needs trust questions. Or, wait for upcoming episodes when we dig deeper into each questions and answer. You can also find all our episodes on the Vista Points website at vistapoints.org, as well as a transcription of each podcast. 

Thank you so much for joining today’s episode of Choose Your Path, a Vista Points podcast. Subscribe now, to your YouTube channel named Vista Points SNT, that’s S-N-T as in special needs trust. There you can subscribe and be notified when the latest episodes come out. By the way, that’s on the 1st and the 15th of every month. 

Each episode creates awareness and provides education about special needs trusts and answers your questions. (Oh, and thanks so much to the subscribers and listeners that’s already sent us their questions!) And if you haven’t asked yours yet, we encourage you to ask a question,  share your concerns online or over the phone. If online, visit Facebook page named VistaPointsInc and send a direct message, otherwise known as a DM, to VistaPointsInc, that’s Vista-Points-I-N-C. 

You may call the Vista Points office at 888-422-4076. That number again is 888-422-4076. Each of the Vista Points team will answer your questions and assist you in whatever way they can.

Enjoy your day with your loved one. Come back for previous and new episodes of Choose Your Path. Regardless of where or when you find us, we walk beside you on the path. I look forward to our next steps together and talking with you soon.