Living with Acronyms
In 2002, my son Ryan was diagnosed with Autism Spectrum Disorder when he was three years old. There was very little widely available information on autism at the time and as a parent, I was desperate to learn more about this diagnosis.
As luck would have it, our small, rural school district had a developmental pre-school and Ry was immediately admitted. Relieved, hopeful and simultaneously overwhelmed, I recall how I felt after my first I.E.P. meeting. I had entered a new world with a different vernacular and felt ill equipped to the task, not knowing how to navigate the system.
In time I figured it out and became an expert at learning about and asking for the services available to Ry through our public school system. I smile to myself with nostalgia when I think about that time.
Yes, I was stressed and afraid, but I had a great team of educators and administrators that provided the consistent and caring support I needed so that Ry could reach his best potential.
Fast forward fourteen years and Ryan was fast approaching the age of majority…how did that happen so quickly? He was on course to graduate with his peers and slowly aging out of public school and his medical care at the local children’s hospital.
In the blink of an eye, I was faced with a disabled son that was entering adulthood and I had no supports or protections in place. As luck would have it, Ry qualified for an extended life skills program linked to our school district.
It was a three- year program with the goal of helping students more easily transition into adulthood. Ry was assigned a caseworker and we were off to the races…whew, what a relief or so I thought.
In our first transition meeting, his caseworker asked, have you secured guardianship yet? Guardianship? Why do I need guardianship? I am his Mom! After a lengthy conversation, I immediately made an appointment with a lawyer and received a comprehensive primer about the importance of having the courts assign me Guardian of the Person and Guardian of the Estate in order to continue to act as Ryan’s advocate and voice.
It quickly became apparent that I was going to have to learn to navigate an entirely different system without the ease of a central resource available to coach me through this new era.
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So, my life became a story of acronyms and government services that I needed to understand and obtain so that my son had the care necessary for us to manage his adult life. I had to differentiate between SSI and why that was different from SSDI, Medicare versus Medicaid, and why DSHS had so many different service groups under their umbrella.
I jokingly described my life as a Venn diagram with 8 intersecting circles and a very small Ry barely visible in the middle. It was daunting. I couldn’t keep the information straight in my head and I was growing increasingly overwhelmed.
In addition to trying to understand why DVR (Department of Vocational Resources) would only provide a job coach for 90 days for free but DDA (Developmental Disabilities Administration) would provide a job coach for life but for a cost, I had mounds of counterintuitive forms and reports that I was responsible for filling out and I was receiving different information depending on who picked up the phone at an agency.
It was remarkably discouraging and I was worried that somehow, by my error, Ryan would lose his Social Security Disability…something that took us two years and a lawyer for him to be awarded.
In time I slowly started to put together the pieces and here is what I have learned:
- Guardianship is an absolute and must be obtained before your child is eighteen. The courts will be very intentional about you reporting how you are supporting and spending money for your child, therefore, as weird as it sounds, keep detailed records. I had difficulty separating what I do for Ry as his mom versus what I do as his guardian.
- Obtaining Social Security Disability support is time consuming and you will be denied at least once. While you are beginning to apply, start shopping around for a good lawyer because in all likelihood, you will need them to present your case to the Social Security judge in your area.
- DSHS has a multitude different departments and agencies. It took me time to understand that the Department of Vocational Rehabilitation and Development Disabilities Administration offered similar, but different supports and both found within DSHS. It was akin to the left hand not knowing what the right hand is doing.
- Find a good caseworker. If you cannot form a connection with the caseworker assigned to your adult child and you, request someone else. It is important for you to feel like you have an advocate that can help you navigate the system and that can easily explain information to you.
- Whenever possible, fill out a paper form with your caseworker assisting. I found that trying to complete paperwork online was difficult. I didn’t always understand what information was being asked of me and the forms were not easy to plow through.
- Be certain that when you receive information, whether over the phone or in person, get the name or business card of the person that is helping you. They can be a great resource if you keep requesting them. They will remember you and your adult child and hopefully you do not have to start over with someone new each time you have a question.
I know in time I will look back at this moment with the same amusement as I did when I am thinking about our first IEP meeting. Managing our children’s disabilities can be challenging, exhausting but with practice, joyful. In the end, all we can really do is research support, ask for help, hope for the future and love our child.
Love the Life You Live
This article was featured in Issue 106 –Maintaining a Healthy Balance With ASD