I’ve been asked several questions in the last few weeks about guardianship of the kids and Social Security. Please understand that guardianship rules are different from state to state and sometimes, from county to county, so know that this is what our journey looked like – this is in no way what yours may look like. Consult an attorney that knows family law in your community for the best advice.
First things first. When your child turns 18 ( or graduates from high school in some areas) they become an “adult” and are legally responsible for themselves. You will no longer have a say in medical treatments or other decisions for your child. Sometimes, a doctor may still look to you for advice on helping your child, but legally, that shouldn’t happen.
Being a guardian simply means that you can continue to make medical and financial decisions for your child. There are different types of guardianship – person, estate and person and estate. I have full guardianship for both kids as neither of them is capable of making the best medical or financial decisions for themselves. To become a guardian, you must apply through your local courts.
It is not a simple process and even though you can do it on your own, I would strongly advise talking to an attorney. I had an attorney for Casey’s and I hired the same one to help with Rob’s. I knew what to expect and what I needed to do, but it was a relief to me to know that someone who knew exactly what to do was handling it. My kids’ are more important than the few hundred dollars I spent to have an attorney help me.
There was never any question that I would need to be their guardian when they got older. They took medicine willingly, but couldn’t tell me why or what it was. They could finally tell me when they needed to see our doctor, but had no idea how to get an appointment. Your child won’t be like mine, so you need to consider what type of guardianship you need.
Casey and Rob have no interest in money (except having three quarters every morning when they head off to work!) so I filed for full guardianship for both. I can legally make medical and financial decisions for them. I know several people who have only person guardianship, which means they can make medical decisions for their child, while the person with autism makes their own financial decisions.
I was surprised at how different Rob’s process was from Casey’s. It had only been four years but it seemed so much easier. We had a different judge for his (and this judge also amended Casey’s to be just like his) but I’m not sure that was the reason. Casey had to go to court with me for hers (and she did amazing!) but Rob didn’t have to go (and that’s a good thing! Though, I’m sure when the judge saw the way he behaved, there would be little doubt as to his disability!).
Does your child understand their diagnosis? Can they choose what medicines to take or tell you why they take them? Do they understand how money works or how to pay bills? There are lists of questions online that may help you determine whether your child needs a guardian. Honestly, their guardian doesn’t have to be a parent. It can be anyone who wants to help them make decisions.
When you decide to become your child’s guardian, start gathering as much information as you can (this is a great idea, anyway, as you will need it to help them apply for Social Security). Hopefully, you have a file with all doctor reports, school reports and any other information that may have been gathered about your child. The more information you have about your child’s abilities, the easier it will be to apply for both Social Security and guardianship.
While you can apply for Social Security online, you will more than likely have to appear in court for guardianship. I can’t tell you which would be easier to apply for first – I’m not sure it makes much difference. That would be a good question for your lawyer.
Expect to have some frustrations when applying for Social Security. I don’t remember having trouble with either Casey or Rob, but I’ve heard stories from parents who are going through the process now. I have no idea why it has to be so difficult – autism isn’t going to go away, so to me, the diagnosis should be enough. But, unfortunately, the powers in charge didn’t ask for my opinion. Just stick with it and count every step forward as a win!
It does take a few months to get approved for Social Security, but when your child does get it, it will be granted from the day you applied, not the date it is approved. So don’t waste a lot of time before helping your child start the process. Remember that if your child has any other type of income, that income must be reported to the SSA at the beginning of every month.
If you are guardian of your child’s estate, make sure you keep accurate records of where you spend the money. You may need to make a report to the court every year (and even if you don’t have to include a financial report, you will have to file a guardian’s report every year. It’s a really simple form, basically asking where the person lives and how often you see him/her) One piece of advice – when you initially file for guardianship and you need a doctor to sign a form, ask the doctor to mark that this condition will not change.
In our county, this means you won’t have to have a doctor sign a form every year. Again, you can ask your court officer if that’s possible. I’m constantly shocked at how different the process is for different areas. Remember to ask your local court all of your questions – I’m just sharing how I did it.
Choosing to be a guardian isn’t always easy. You don’t want to take away your adult child’s right to make decisions on their own, but you have to keep them safe. If you aren’t your child’s guardian, someone could take advantage of them – sell them a car or have them sign a loan paper. And you won’t have much to say about it. It’s scary and sad how many people are looking for people with disabilities to take advantage of.
Be aware that when you file for guardianship, you will be checked, too. Expect a background check, even if you are the parent. The court is looking out for your child’s best interest and sometimes, the parent isn’t the best choice. You may also have to buy bond insurance so if you decide to run off with your child’s estate, the insurance will reimburse your child. Don’t be offended – you know you only want what’s best for your child, but again, some parents don’t feel that way.
Filing for guardianship is a big decision for some parents. I know it’s hard to feel like you are taking something away from your child, but in reality, you are protecting them. I advise you to find a local attorney who is very familiar with family law and discuss your concerns with him/her. That’s the best place to get the answers you and your child need.
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