Watching My Heart Beat Outside My Body

Travis turned eighteen just before he started his senior year at Humanex Academy. How did that happen? Over the years I had been so busy looking for the key to unlock the answer to his learning disability, that I had never considered that I may never find it.

Years ago we were told by a school psychologist that we were lucky that Travis scored a 67 on his IQ test. Because with that score he would qualify for state and federal services. Lucky? I can assure you that we never considered ourselves lucky that our child would one day qualify for benefits.

We simply could not understand why his score was so low. The school psychologist explained that Travis struggled with processing speed and short term working memory issues. And these issues were the most heavily weighted when determining the overall score. As they should be. Because as we well know today, short term working memory and processing speed issues affects not only learning but day to day living.

We refused to believe that he was not going to get better. And do better. That one day the light would go on in his brain and he would be able to decipher the code of reading. And once that happened everything would begin to fall into place.

Maybe that is why his turning eighteen snuck up on us.

I decided that it may not be a bad idea to begin to research supports that Travis may need in his adult life.

In Colorado an individual can qualify for state services at the age of eighteen. Colorado has what is called a developmental disability (DD) waiver. Typically, to qualify for this waiver an individual needs to score a 70 or lower on an IQ test. But an individual can also qualify with a higher IQ depending on their adaptive behavior test scores. Adaptive behavior scales assess skills in daily living, community participation, social abilities, and communication.

Each county in Colorado has a Community Center Board (CCB) that provides case management services that assists individuals in accessing necessary services and supports to meet their needs. Per the Colorado.gov website, “Services include intake, eligibility determination, service plan development, arrangement for services, delivery of services, service and support coordination, monitoring any safeguards necessary to prevent conflict of interest between case management and direct service provision, and termination and discharge from services”.

In doing my research I realized that I should have been considering what Travis’s future might look like given his current level of ability. Because there is a waitlist for services.

I did have some knowledge on available services. When Travis was younger I had worked for a service provider agency for individuals with developmental and intellectual disabilities. I worked there as a Business Manager for a couple of years. During my time in that position I worked with the CCB’s in two different counties. One of the two CCB’s was much more effective at the time in providing support for their clients. The more effective CCB was in the county of the agency I worked for, but not the county that we lived in.

When it was time to apply for services for Travis I called the CCB that I wanted to serve Travis if he qualified, even though we did not live in that particular county. They said that they would go ahead and do his intake and determine if he was eligible for services. And if he was he would be put on their waitlist. We were told that when his name came to the top of the waitlist we would need to move Travis into the appropriate county.

During this time I wanted Travis to live in our current county and in our home for as long as possible. Because he was still attending high school. And after high school he would be able to access 18-21 transition services from our local school district because he was on an Individual Education Plan (IEP). I felt strongly that our local district needed to continue to fund Travis’s out of district school placement. Because based on our past experience with our district I felt like they owed Travis at least that much. And if Travis was still on the waitlist for services when he finished high school, I had every intention of taking a look at what our local school district offered for 18-21 transition services. I hoped the timing would work because for our district to continue to have responsibility for Travis’s schooling we needed to be living in our hometown, and thus our county.

If you have been following our story, you already know that I have saved pretty much every piece of paper regarding Travis over the years. This came in handy during the application process. We had all the necessary testing and evaluations for Travis to be considered for appropriate supports and services.

I turned the application in to Foothills Gateway, the CCB that I wanted to support Travis, in July of 2011, a week after Travis turned eighteen. The eligibility committee for Foothills Gateway met on August 30th and determined that Travis was eligible for services funded by the Division for Developmental Disabilities (DDD) based on the definition of developmental disability in the state of Colorado. The letter we received from Foothills Gateway stated, “Determination of eligibility does not guarantee that services are available at this time. Services are provided based on availability of funding, and on the order of placement on our waiting list.”

If I had any advice for parents, it would be to check what services and supports may be available in your state, and see if you can apply before the age of eighteen. So if there is a waitlist, your child can maybe start working their way up to the top. There may also be services and supports available for children under the age of eighteen. These type of services are available in Colorado, but I do not believe that Travis would have qualified because he had health insurance coverage and was receiving therapy at his school settings.

Different services are available depending on an individual’s level of need. Travis was eligible to receive some services while he was on the waitlist. Remember that Foothills Gateway is the Community Center Board for the county and they oversee services that are paid by the state of Colorado. Foothills Gateway recommended that we immediately apply for SSI. Because once Travis received SSI he would automatically qualify for Medicaid. Foothills Gateway would be billing Medicaid to cover the services they provided for Travis.

When an individual turns eighteen years old, they are considered an adult of their own household by the Social Security Administration (SSA). They can apply for Supplemental Security Income (SSI) to help cover expenses like rent, utilities, phone, food, etc. If an individual is approved for SSI they are then eligible for Medicaid as a health benefit. Medicaid should be set up as a result of SSI approval. We found getting SSI approval a nightmare of a process. Travis did get approved. That story will be it’s own separate blog post. So he did qualify for Medicaid.

This immediately presented problems. Because he was also on our family’s health plan. Waitlist services included seeing both a psychiatrist and a therapist at Foothills Gateway. We agreed with Travis’s case manager at Foothills Gateway, that Travis should begin to work and develop a relationship with these professionals as they would be part of his long term care.

The problem began as Medicaid knew that Travis had other coverage and wanted that coverage to pay claims first. But these particular doctors were not within our network with our insurance. We were advised by the CCB that we needed to drop Travis from our health insurance.

Our system is broken. It did not cost our family any more money to keep Travis on our plan because we needed to have a family plan with or without him on it. But we had to drop him from it in order to receive care from the team that would ultimately provide his care long term. It seems that there should be a way to solve this problem that would be better for taxpayers.

At the same time, Travis turning eighteen and becoming an adult, brought up some other concerns. Even though he was now an adult, he was unable to make adult decisions. He struggled with impulsivity, decision making, planning, and money management.

We were also advised to become his legal guardians at this time. I will also cover that topic in a blog of it’s own.

As parents, our children turning eighteen is such a milestone. It brings on so many emotions. We are excited for them to start their adult life and make adult decisions. But we are also scared, right? We want them to make their way in the world. But at the same time we want to protect them. Because we know that this world can not only be beautiful, but also sometimes harsh. I have always described raising my children as “watching my heart beat outside my body”.

We know that our children may be leaving soon to start their adult plans and we realize that we may soon be empty nesters.

But when Travis turned eighteen, I dialed up the “worryometer” a few notches. And I have been struggling to dial it back down ever since.

Would he ever be able to live independent of us?

As I started filling out all of the paperwork necessary to make sure that his needs would be met, I started to worry about what would become of Travis once we are gone. I knew his sister would be there for him, but I also realized that I needed to put a plan in place that would take care of him and his needs well into the future.

Maybe he would need support and services short term. Maybe long term. Either way he needed supports and services at the time. With the hope that he would become as independent as possible.

As I began to navigate the mounds of paperwork required to obtain the support that Travis needed, I quickly realized that I was going to need to become a strong advocate for him. Processing and organizing this paperwork is simply not for the faint of heart. No, but seriously, an individual with a disability would not be able to get through this system on their own.

I have shared that I, for some unknown reason at the time, saved all the paperwork regarding Travis. You should see how many file cabinets I have.

Now we know that I was meant to keep all of those records. So that I can share our story with you.

“Through the blur, I wondered if I was alone or if other parents felt the way I did - that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body, and yet, each child represented just that - a parent’s heart bared, beating forever outside our chest.” - Debra Ginsberg