Transitioning Out Of High School – Medicaid Waiver

Four events had a synergistic effect, leading Jess to becoming more interested in interacting with us and isolating herself less. The first was stress reduction. The second was the right combination of medication. 

Summers are difficult for many autism parents. The daily routine and structure of the school day disappears. The weekly built-in break for parents is temporarily gone. Families do what they need to do to get through the summer. Like I used to, I’m guessing that many parents breathe a huge sigh of relief when the next school year begins and the routine starts back up.

Except after aging out of high school.

Then, it’s like an unstructured summer forever. For many, that is when having a Medicaid Waiver becomes critical. The Medicaid Waiver is key to being able to continue services, have structure, and have steady access to the community after aging out of school.

Parent’s Goals

The goal – the dream – for parents is for their child to be prepared for the future. For some, that means getting accepted to college, succeeding in college, getting a job, eventually having their own family, and most of all, being happy. Others may not have the goal of college. Theirs might be a goal of having a good job that will support them and the family they hope to have one day – and of course, a goal of happiness. For some (obviously not all) parents of children with special needs, the goal is not college, not a family, but enough independence, training, and opportunity to be prepared for some kind of job so their grown child can contribute, be a tax payer, and be happy. That was my goal for Jess.

I was so focused on that goal that it affected my judgement about being prepared for other scenarios. All throughout Jessica’s years of high school I kept procrastinating about applying for the Waiver. I honestly was not able to foresee how much I was going to need Medicaid Waiver services. Up until Jessica’s last year of school, I still believed she would be able to hold a job of some kind. I knew she was capable of contributing somewhere, we just had to find the right thing.

Aging Out – It Eventually Happens

Towards the end of Jessica’s last year of school, my goal changed. I was no longer focused on her having a job. My focus became figuring out what all Jess needed to learn to be able to care for herself at home. I examined all of the stages of each part of the day and what she needed to know and learn to navigate through the day. The strongest focus was on safety issues and adaptations that would need to be made to keep her safe. If she could safely care for herself during the day, I could still work. But still, I did not foresee the impact of not filling out the Waiver application. Jess graduated (aged out) in May, 2009.

During the first two years after aging out, I pieced together part-time supervision for Jess while I worked. Jessica’s sister, Hannah, kept her after school, on weekends, holidays, and in the summers. The grandparents helped too. Then, a couple of bizarre years ensued.

Things That Only Happen To Other People

It was like an out-of-body experience that went on for years. In Spring 2011, an F4 tornado hit our hometown. Three months later, Hannah became deathly ill. I took 4 weeks of FMLA to be with her and basically turned the care of Jessica over to friends and family. In the Fall, I was back at work while Hannah drove herself to the hospital for weekly infusions and to Physical Therapy. That winter, I had major surgery and had to take another 8 weeks off from work.

During those weeks, I was home to supervise Jess. At the same time, brave Hannah decided to start to college very part-time. Unfortunately, she had some cardiac complications that caused her to have to discontinue her physical therapy rehab and also made it difficult to navigate her college campus. However, she persisted and also started working part-time. Almost a year after she almost lost her life to a devastating illness, Hannah was in college and working. She continued to receive infusions for another whole year. With all of those things going on in our life, filling out the Waiver application was so far down on my list that I would only occasionally remember that it existed.

May 2012

That is when I finally conquered The Wall of Paper and got the Medicaid Waiver application faxed in. Three years after Jess aged out. She was placed on the “short” waiting list. What finally motivated me to get it done? I realized my goal had never been met as life settled back down after all the craziness. Jess had never gotten to the necessary point of independence and self-care. She had no daily structure, she wasn’t working on any goals to increase her independence, and she wasn’t getting out into the community. She was stuck at home day after day.

Then, my work schedule changed and she was having to spend too much time being left by herself at home. It wasn’t safe. I needed help. If I had the Medicaid Waiver, I would have resources to have her supervised during the day while I worked. Suddenly, I was in a big hurry to have the Waiver. I was becoming increasingly nervous and worried about leaving Jess alone. It was a distraction for me at work, and my work environment was a critical one.

July 2013

Approval for Jessica’s New Options Waiver (NOW) came one year and two months after the application submission. Seven months later, notification came that funding was approved and released. It was another 4 months before meetings, assessments, and paperwork was finished and Jess could use the Waiver. It was a total of two years between application and when the Waiver was approved, funded, and in action. June, 2014. Five years after aging out of high school. That seemed like a long time to wait, but for many families the wait is many years longer than that.

Documentation of what followed is in previous posts. This list is a condensed version (Follow the links for expanded details):

• Jess wanted to try a ‘school’ (adult day program) setting. She wanted to socialize so I agreed to try. (Why was I resistant? Brutal honesty – https://autisticinterpretations.com/what-i-never-wanted/)
• The planning process for starting to school got off to a rocky start. (read more: https://autisticinterpretations.com/surviving-the-waiting-list/)
• Days 1 and 2 did not go well. (https://autisticinterpretations.com/a-new-beginning-again/)
• Day 3 was utterly traumatic. (https://autisticinterpretations.com/routines-prized-possessions-and-violations/)
• I was forced to resign from a job. (https://autisticinterpretations.com/reverence-integrity-compassion-and-excellence-r-i-c-e/)
• The Beginning of the End of All Plans (https://autisticinterpretations.com/the-beginning-of-the-end/)
• The Final Accommodation would be mine. I gave up my nursing career and withdrew Jess from her day program. (https://autisticinterpretations.com/the-final-accommodation/)

Does it take running out of options to find the perfect answer? 

Two years have passed since the realization that none of our efforts would succeed, not even a day program placement, nor the ability for independent self-care. Getting to that point was truly devastating to me. It felt like the ultimate defeat. The only option we had left was to self-direct the waiver.

Because of the Medicaid Waiver and self-directing, Jess now has a good staff of caregivers, a good routine, and is getting out of the house and into the community at least 4 and sometimes 5 days a week. She is much happier and with the structure of her steady, established schedule, and her regular access and involvement in the community.

Life is calm with lower stress. There is enormous value in this. Our days are more family oriented. It is a great change and a welcome relief from the days of wondering how we were going to make it through each day safely and without losing a job. This is much better. You could almost say the proof is in the pudding. 

It has been interesting to see this part of Jess that has been emerging. After 28 years, she began showing more interest in OUR world. Slight, but it is there. Jess engages with those around her and is isolating herself less. This change, having access to the Waiver and also being able to self-direct, is the third part of the synergy. It was a large piece of the puzzle. It’s hard to even put an adequate description on the overall difference it has made in our lives, but believe me when I say that it is a daily difference and it is truly significant.

http://wp.me/s5DUsf-waiver