In a Perfect World — No Stone Left Unturned

When you have a child with special needs, every decision you make takes careful consideration. Even when your child is an adult. I am a part of Team Travis in making decisions for his day to day care. That team also includes his case manager from Foothills Gateway, the local community center board (CCB) that manages his State of Colorado Developmental Disabilities (DD) waiver benefits. His therapist and psychiatrist are also part of the team. Other members come and go as his services change.

The counselor from Division of Vocational Rehabilitation (DVR) was a long-time member when Travis was receiving services through their agency. Travis receives services through various provider agencies. A representative from each agency that provides services is also part of Team Travis.

Tracy, Corey and I are Travis’s legal co-guardians. We were advised when we petitioned the court for guardianship to include Corey as a co-guardian. So that if anything happened to me and Tracy, she would already be set up without having to go back to court.

We petitioned the court for guardianship when Travis turned eighteen. He was not able to make adult decisions at the time. He is still not able to make those type of decisions. Nine years later.

I carry the court order appointing us as Travis’s guardians in my purse. Travis’s regular doctors and therapists have the court order in their files. This court appointment makes it possible for me to be part of Travis’s every doctor visit. He has many chronic health issues. There is just no way that he would be able to keep track of all the directions given by a health care provider.

An important piece of being a legal guardian to Travis is that it gives me the voice of a parent, even though he is an adult. If a doctor only took Travis’s wishes into consideration, Travis, (and his family), would suffer the consequences. Travis does not understand the concept of consequences.

For example, he doesn’t believe he should take medication for his mental illness. When he doesn’t, he spirals downhill. But in the moment, like at the doctor visit, he feels like he doesn’t need them anymore. But then I weigh in. Reminding him that he may be feeling like he is in a good place because of the medicine.

Every July before his birthday, I am required to complete a guardian’s report to the court. Last year I was a couple of days late and I received a contempt of court citation.

Tracy needed to spend this weekend at our farm in Kansas to do some what he calls. “fighting back nature”. He wanted me to join him. I recently updated our phone plan to include some hot spot data for each line. And unlimited data.

So even though I was feeling a bit overwhelmed about what the next couple of weeks have in store, I said sure. I was able to complete the bulk of the report on my laptop at the farm. I just have the financial activity section left to do when I get home. Which is easy because I have all the numbers and receipts available, as I am also Travis’s representative payee. Which means I am responsible for his money and bills.

The guardian report is a fill in the blanks with detail type of report. The bulk of the report is describing Travis’s current mental, physical and social condition. We must also update any medical, educational and vocational services being provided.

I have to answer questions about how often I see Travis and how much time I spend with him. I know that the court wants to be sure that we are guardians for all the right reasons and that his needs are being met.

There is a question about giving examples of the decisions that we let Travis make. When you are a guardian for another, it is important to let your ward make as many decisions for themselves as safely possible. Because I am also his parent, I give him advice as to why I think something may be a bad idea, but ultimately let him make decisions. In a previous blog titled, “Walking a Fine Line”, I address the fine line between parenting and “guardianing”.

As I said above, last year my report was a couple of days late. After I did get it in I received a letter that the report was too similar to the report the year before. To be clear, I never said things such as same as last year, or no change since last report. I actually typed in answers to each question.

The truth is that he lives in the same place, he still has a live-in aide, he still sees the same therapist, psychiatrist and doctor, ….. Not a lot changes regarding his care, and that’s a good thing. Right? We work hard to keep his life stable and routine.

The reason I am feeling a bit overwhelmed with what is in store the next couple of weeks is because Travis will be having a tonsillectomy later this week. More of that story to come!

When you make decisions like becoming a legal guardian for your adult child, your hope is that it is not forever. Maybe in a couple of years he will (what is the word I am looking for) mature? I mean, we know that his intellectual disability is a forever diagnosis. Is it possible that he will grow to a point where he can make sound and safe decisions?

But we also have to plan for the possibility that Travis is going to need this level of support his entire life. I took a class on becoming a legal guardian and how to complete the petition to the court and the ongoing paperwork. The instructor advised me to add his sister Corey as a co-guardian during the petition process. It must be the instructor’s experience that some individuals are going to need life-long support.

As I continued my research and attended seminars about how to take care of Travis’s needs as an adult, I was also introduced to the idea of a establishing a special needs trust.

Years ago I realized that we were going to need to plan for Travis’s needs beyond our lifespans. We knew that we were not going to be able to leave Travis an inheritance. Travis is simply not responsible with money. He is unable to hang on to any amount of money for a future purchase, or to save money that he gets today toward something he cannot afford today. He spends it immediately on a want, as opposed to a need. He craves instant gratification. And he is easily exploited.

That is why I cannot give him cash. Let’s say he asks me for $20 for an item he wants. His friends learn he has $20. He calls me and asks me for $20 for the same item. I tell him I already gave you $20 for that. He says, I used that $20 to buy pizza for the gang.

It makes being his representative payee a very difficult job. Because after I pay his bills, I have to dole out his money to him in small increments at a time. Oftentimes I make him call me from the store with a total and move the money at the time. Because I need to be sure he is actually putting gas in his car and not buying snacks for the gang.

What would happen if we left him money?

We knew we needed to come up with a plan. It is important for Travis to maintain his benefits so that he can continue to receive care from his team. It is also important that he continue to achieve maximum independence and quality of life.

When you receive Supplemental Security Income (SSI) you are not allowed to acquire over $2,ooo. in assets. If we left him over $2,000 in assets he would lose his benefits. Once he spent down the excess he would have to reapply. It’s hard enough to obtain benefits. If he received an inheritance, that means I am no longer around to advocate and take care of all of the paperwork and deadlines.

The elements of a special needs trust are as follows:

Social Security describes a qualifying trust as “a trust in which the trustee has full discretion as to the time, purpose and amount of all distributions.”
If the beneficiary has no discretion over the distributions, the trust is not a counted asset for SSI eligibility.
Medicaid rules are the same.
Can be used for many purposes, such as travel, meals, electronics, automobiles, clothing etc…

It is important to note that these are the things that we provide for Travis now. When we eat out, we pay. When we travel or vacation, we pay. We have provided his automobiles. His benefits are to cover living expenses.

Per www.elderlawcolorado.com, “The Special Needs Trust is a mechanism which provides for those extras that can make the difference between subsisting and thriving.”

Per www.mydenverlawyer.com, “The plan is more than simply a trust - it is an integrated set of documents which create a “parental substitute system.” The goal is maximum independence and quality of life for Travis.

Another important reason a parent should leave their inheritance in the form of a trust when a child with a disability is involved is so that the inheritance is safe from situations such as a failed marriage or failed credit. If a parent decided they would leave the inheritance to the siblings to take care of the disabled sibling, that money could end up not being available to take care of the needs of the disabled child. The trust is not available to collect debts from and is not in the name of any child. In our case, we are not worried about those type of situations.

We set up a special needs trust years ago. Corey is the trustee. When a special needs trust is created, clear written instructions are developed. We came up with a list of examples of what we determined acceptable items for Corey to spend money on for her brother. We have total faith in her taking good care of her brother once we are gone.

Parenting a child with special needs is just plain hard. So many decisions. So much planning for the future. Lots of second-guessing, changes in your decisions and planning along the way. The responsibility is overwhelming.

With the biggest concern currently being, do we have enough set aside to retire and also take care of Travis when we are gone?

In a perfect world, I would know all the answers, make all the right decisions, and be able to predict the future.

"We spend our whole lives worrying about the future, planning for the future, trying to predict the future, as if figuring it out would cushion the blow. But the future is always changing. The future is the home of our deepest fears and wildest hopes. But one thing is for certain. When if finally reveals itself, the future is never the way we imagined it.” - Shonda Rhimes

“Always plan ahead. It wasn’t raining when Noah built the ark.” - Richard Cushing