Before I get into the meat of this post, a little background: I am a special needs parent. My mother is a teacher of the disabled. My brother has significant physical and learning differences. Before I was ever an attorney, I knew that kids with special needs needed certain legal accommodations because I watched my parents fight for my brother to get the accommodations he needed. Fortunately, my brother has normal cognition so there is no need for major legal fighting for him right now, as he is a functional adult.
Fast forward to my adulthood. My wife and I were blessed with beautiful twin daughters. My younger child has a very rare genetic condition that leaves her with severe impairments both physical and cognitive. I had never looked at disability from my perspective as a lawyer but when we received her diagnosis it hit me square in the face: she was NEVER going to be able to fend for herself in this world. She would always need us to care for her. So I did what I was trained to do – I researched what happens when severely disabled kids grow up. It’s complicated.
Now to the real reason to post this – what happens when a disabled child turns 18? The same thing that happens when a typical child does: they become adults and can do whatever they want! Slight problem, depending on the disability, that individual may lack the mental capacity to act as an adult. Nevertheless on the disabled person’s 18th birthday HIPAA and other privacy laws kick in and you as the parent can no longer get medical or educational information. You are no longer that person’s legal guardian as they are now adults. Obviously, with individuals with complex medical and educational needs this is not a good thing. What you would then need to do is seek guardianship through the courts.
Guardianship is the legal process by which the Court determines that an individual is incapacitated by reason of their medical, psychological or other condition and lacks the ability to manage their affairs. This can be to various degrees, and the Court can either grant a full or plenary guardianship or limit that guardianship. The AIP (alleged incapacitated person) gets an attorney because their rights are going to necessarily be abridged, since the proposed guardian will be able to make decisions for them both financial and medical. So, why do this? For many, this is necessary to maintain the ability to direct medical and personal decisions for your kids who cannot do it for themselves due to lack of intellectual capacity.
It’s never an easy decision to take guardianship of your now-adult child. That said, sometimes you have to do what you have to. In some cases, its an easy call. In other cases its a balancing act – what does your child/loved one need versus what can they do for themselves. Taking on guardianship is one of the most selfless things one can do. Over the years, I have had the pleasure of representing many parents who have continued to care for their children, siblings who stepped up to the plate and children who have taken on the burden for their families where the prior generation didn’t take formal action. I have also represented AIPs and had the privilege of interviewing them and their families and seeing how deeply the proposed guardians care for their loved ones. It’s one of the few areas of practice where something beautiful comes of out adversity.
In my practice the Law Offices of Scott J. Goldstein, one of our areas of expertise is helping families determine if guardianship is the right way to move forward and shepherding them through the process. Call us for a consultation, or make an appointment online.