Special Needs Planning: 3 of 3

January 10, 2020

Part 3 – Failing to Take Action

Special Needs Planning

For the past two days I have talked about why planning for the future of your loved one with a disability is so crucial, and the consequences of what happens when you don’t plan.  The following poignant case studies illustrate my point. These are true stories of circumstances that could have been prevented by taking some simple planning steps. Don’t let yourself and your loved one become another story of the consequences of not planning.


Marc and Amy divorced about 18-months after Kenny was born.  The divorce was not pleasant, but it was not a war either. Marc agreed to Amy having custody of their two children.  Kenny, who has Cornelia de Lange Syndrome, is the youngest.

Marc paid alimony and child support regularly for the first few months.  His bi-monthly visit to the children became less and less frequent. Support checks arrived late, and sometimes not at all.  Marc remarried about two-years later and moved to another state. The support checks stopped altogether as did the visits and holiday cards.  Amy was “on her own.”

Amy’s family helped.  Even Marc’s parent’s provided some financial assistance.  Amy inherited $300,000 from her grandfather. This was a tremendous help, as it allowed her to work fewer hours at her job and spend more time with Kenny.

Kenny was 12-years-old when Amy was diagnosed with breast cancer.  Surgery and months of chemotherapy and radiation were unsuccessful.  Believing she would not die, Amy did not make any provisions for her estate or children.

After Amy’s death, Marc, being the biological father, was given custody of the children even with his history of defaulting on child support, and not having seen the children in years.  He also received control of Amy’s estate. Could this have been his motivation to get custody of the children? Control of their inheritance? Is Marc truly the best person suited to care for these children?  Do you think this is what Amy wanted?

What could Amy have done to avoid this situation?  There was no guarantee that Marc could be kept from getting custody of the children.  Amy would have been wise to keep a journal of missed support checks, the infrequent calls and visits, and how Marc voluntarily estranged himself from the children.  At least other family members would have had a strong case to contest Marc’s appointment as guardian and trustee. However, Amy could have guaranteed that Marc would have no access to, or control of the money she left her children.  A Special Needs Trust for Kenny and a traditional Trust for her other child, would have a Successor Trustee appointed by Amy, to manage and control the funds for the benefit of the children and out of the hands of Marc. The Successor Trustee also has sole discretion in disbursements from the Special Needs Trust.

Amy might have been able to convince Marc to rescind his parental rights leaving her able to appoint a Successor Guardian/Conservator of her own choice.  Regardless, she should have discussed this with him. She could have stated what she wanted for Kenny and made the necessary arrangements while she was still able.

If Marc violated his duties as Trustees and misused the assets in the trusts he would have been liable for criminal charges.  However, the likelihood of the money being replaced is zero to none. A big problem was ignored. The opportunity to resolve it easily was gone.  This is a common occurrence.

Bubba, Bubba, Bubba

Michael is 42-years-old and lives with his mother, Anne.  Michael has multiple disabilities. His communication and functioning skills are at the level of a two-year-old.  He uses a wheelchair and requires assistance for all of his needs. Anne has cared for him his entire life.

Michael is able to speak a few words.  One of the things he does is roll his head from side-to-side, smile and say, “Bubba, Bubba, Bubba.”  I asked Anne what Michael meant. “What do you think it means?” she responded. I told her I had no idea.  Anne said, “Bubba, Bubba, Bubba means “bubbles!” So I assumed Michael wanted Anne to blow bubbles for him. Anne further explained, “It’s bubbles in a soft drink.  He likes the tickle in his throat when he drinks it.”

It is a cute story, however, it made me think.  Anne had done no planning. There was no written information or instructions for Michael’s care needs.  Imagine if Michael came to live with you and you have to figure everything out yourself. You watch him roll his head and hear Michael say, “Bubba, Bubba, Bubba” a few times each day.  What would you think he meant? After a few days he says it again, this time without a smile and fewer times each day. By the end of two weeks he never says it again.

Michael’s limited communication skills allowed him to express a desire for one of the few things that made him happy and gave him pleasure.  Who knows what self-esteem he felt because he was able to make a request and have it understood and fulfilled. What a tragedy it would be if Anne died and never let anyone know about, “Bubba, Bubba, Bubba.”  Think about how well and secure Michael would feel, if after losing his Mother, being moved from his home, and changing his life completely, he says to his new care providers, “Bubba, Bubba, Bubba,” and they know to give him that favorite soft drink.  How do you think it would make Anne feel if she could see Michael’s smile?

It is a touching story, however, it made me think, “What happens if like in Anne’s case, you had done no planning?”  As in Michael’s situation, there was no written information or instructions for your loved one. Imagine if Michael came to live with you, and you had to figure everything out yourself.  You watch him roll his head and hear him say, “Bubba, Bubba, Bubba” a few times each day. What would you think he meant? After a few days he says it again, this time without a smile and fewer times each day.  By the end of two weeks, he never says it again. I addressed earlier the reality of mortality and the fact that your child may very well survive you. You will not be gone for “just a few hours.” You are gone permanently.

My intention these past three days has been to help you appreciate and understand how dire the consequences will be for your loved one with special needs if you have not done any future planning for them.  

These two stories make abundantly clear that the person you are hurting by not doing special needs planning, is your loved one with special needs.  Who better than you to know and understand their wants and needs? They are relying on you to take care of them, because they cannot take partial or full care of themselves.

Those attending my seminars or hearing my presentation at a conference, ask afterwards where they could get the most up-to-date information I presented?  That’s why my partner Bart Stevens finally wrote, “The Beginner’s Guide to Special Needs Planning©, originally released in November 2002 and updated in January 2018.  The book removes the obstacles in planning, answers your questions, and guides you through the planning process in a simple, step-by-step method.  It takes an overwhelming process and breaks it down into simple steps that you can easily understand. After reading this book, you will be prepared to begin the actual planning process. Contact us for your copy.

Planning today will eliminate your concerns so you can be assured that your loved one with special needs will have the best care, security, and quality of life possible.  Don’t delay, visit www.SerenitasSNP.com, or call 818-231-6759 today.

If I NeedHelp makes wearable iD and offers a free Caregiver controlled special needs registry for our loved ones who may wander or need assistance in a critical moment.