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.

Special Needs Plan: Part 2 of 3

January 9, 2020

Part 2 – Did You Know?

Special Needs Planning

Yesterday, I talked about why planning for the future of your loved one with a disability is so critically important.  Today, I want to talk about what proper planning can actually accomplish. What it really means.

With proper planning, you will decide who will care for your child; where they will live; who will manage assets left for their care; the type of care he or she will receive; and what your specific wishes and goals are for your loved one.  If you do not plan, these decisions will be made by the state in which your loved one lives and those who will be appointed to provide care and supervision. You have no assurances that what you want for your loved one will be done.

Stop for a minute and think about what would happen tomorrow if you were not here.

Review all the things you do each day for your loved one. Dressing; feeding; getting them off to school, work or the adult center; knowing their dietary needs; how to communicate; and all the other “little” details.  This information must be given now to current providers (teachers, therapists, medical practitioners, case workers) and those who will serve in the future (guardians, trustees, conservators). Do you want the people who provide care and protection for your child to have to figure everything out on their own?  What if they can’t figure it out? What effect will this have on your child? Is it fair to them or your child not to plan now before it’s too late? Creating the Letter of Intent, does just this. It’s not a legal document, merely the instrument to provide comprehensive information to current and future providers about your loved one’s abilities and requirements.  This is a document that should be updated each year as your loved one grows and his or her needs change.

How can you provide for the supplemental needs of your loved one with a disability without jeopardizing their Social Security and healthcare benefits? 

Why is it so important to make family and friends aware of the planning you have done for your loved one? How is it possible that one well meaning person can throw a “monkey wrench” into all the careful plans you have made and jeopardize your loved one’s Social Security and healthcare benefits, and result in the loss of assets left for his or her care?  By creating a Special Needs Trust to hold, manage and protect the assets you leave for your loved one, you will ensure them a lifetime of care and supervision. By setting-up the correct Trust, family and friends can put their assets into the Trust while still living. Not all Trusts allow you to do that.

When you set-up a Special Needs Trust, your loved one with a disability is the beneficiary of the Trust.  Why is this so important? Because some families are concerned that should a Special Needs Trust be established, and their loved one with a disability becomes self-sufficient and no longer needs the Trust funds, the money is no longer available to them.  What happens? The money can be used for their college education, a home, a car, to start a business, anything they want to use it for.

In addition to the above, let’s look at what else you can accomplish with the proper planning.  No planning, or improper planning can have dire consequences, including:

  • All the guardians/conservators and trustees and their successors can be chosen ahead of time.  You can even ask your child with special needs who they would like to take care of them after your death.  What peace of mind for you knowing that your loved one will have guardians and trustees of your choosing taking care of them.
  • Not all assets pass through a Will.  Life insurance, retirement plans and annuities pass by beneficiary designation.  Your child could receive these assets even if they are not named as a beneficiary.  With proper planning, a serious potential problem can be averted.
  • If the State is unable to find a single home for all of your children, they could be forced to live in separate homes.
  • Your Estate will be distributed according to the rules of “Intestacy” in your State of residence.  You have no say in this matter. If you are divorced from your child’s biological parent and remarried, your current spouse receives all your personal property and can do anything they want with it.  If you are unmarried, your children share your Estate equally. Either way, your loved one with special needs may not get enough to live on, or anything at all.
  • Regardless of how much in assets your loved one receives in their name, this money is subject to an immediate payback to Medicaid for previously provided healthcare services.
  • In addition to the payback to Medicaid, if the person’s remaining assets exceed $2,000, they will be ineligible for Supplemental Security Income (SSI) and Medicaid.  The result is the loss of part, or all of their inheritance, ineligibility for SSI cash benefits and healthcare through Medicaid.
  • Your child’s standard of living could be seriously jeopardized with the loss of these benefits and assets.  To make matters worse, there are no budgetary guidelines to know exactly what your child’s monthly income requirements will be.

Are you starting to get the picture as to why future planning for your loved one with a disability is no longer an option?  You must take responsibility and begin the planning process today. What I’ve talked about is only the tip of the iceberg. If you don’t do proper planning, you can see the problems you are creating for your loved one with a disability.  No one wants to think about his or her own mortality. It’s downright scary. But don’t you want to make your loved one’s transition after your death as easy as possible? Discover the solutions for today, tomorrow and the future, by visiting Serenitas Special Needs Planning at www.SerenitasSNP.com, or call 818-231-6759.  Make the commitment 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.