I often say you they don’t give you a handbook when you become a parent, and there definitely isn’t one when you become the parent of child with special needs. The first pediatrician we brought our baby daughter to said, “This is beyond me”. My response was, “What is beyond you?” to which he replied, “Whatever the diagnosis is.” At that moment began the 23-year journey of trying to figure out how to help Rachel.
After countless doctor’s visits and all sorts of testing we were told Rachel had characteristics of Autism Spectrum Disorder (ASD) and was diagnosed as Autistic. There have been many learning curves along the way, but the one that caught me off guard the most was when Rachel turned 18 years old. I remember calling her pediatrician one day looking for some information. They ran through the usual questions and when asked for Rachel’s date of birth, the response I received was “Since Rachel is now 18, legally we can’t discuss her personal information with you”. Whoops, didn’t see that coming! Obviously the doctor’s office was aware of Rachel’s circumstances and worked with us, but suggested that we pursue legal guardianship. I think it was one of those things that you know it was coming, but don’t quite understand the implications of putting it off until, (as the saying goes) ‘it’s in your face’.
We not only found out that we could not access her personal information, but in the following months after we applied for SSI support for Rachel, she received a jury duty summons, credit card offers and a number of other things that can be taken for granted when turning 18.
We live north of Boston and at the time Rachel had been receiving support services from EMARC (East Middlesex Association for Children.). I contacted one of the people we had been working with in their Family Support Center. She was able to provide me with a step by step process to apply for legal guardianship. In addition, she made herself available for any questions I had and was very helpful throughout the process. I wouldn’t say it was difficult, but I also wouldn’t recommend it for everyone. It was definitely a process with critical timelines that needed to be met in order to get a court date and then you hope like heck you’ve got all the materials required - all T’s crossed and I’s dotted. From the, ‘you don’t know what you don’t know school of thought’ we found out at one point in the process that, at least in our case, it is better to have one parent designated as legal guardian and the other as a personal care attendant (PCA). If need be, a personal care attendant can receive compensation while a legal guardian cannot. In our instance this may be important, as Rachel requires a lot of support and her needs could someday impact household income. We found this out by happenstance, so again I would recommend that anyone looking to pursue legal guardianship on their own be sure to get as much information and guidance as possible, every state will have different requirements and guidelines. For many families, seeking legal assistance in the process is a very wise choice. For more information on guardianship, CLICK HERE>>
Helping our children embark over the threshold into adulthood is a big job, knowing that you can do some legwork in advance will hopefully help make the process a little less daunting.
All my best,
Director of Development