Planning for transition to adulthood for our kids seems to take us parents by surprise, no matter how much we have researched and prepared for it. Our son turned 18 in 2021, just 1 month before a series of horrendous hospitalizations that lasted 4 months. Needless to say, the transition was the last thing on my mind and I have been working hard since then to get caught up.
For those that may not be aware, when a child with disabilities turns 18, they lose what seems like all of their specialists and non-specialist doctors. We had spent years developing a team that we could trust, that listened to our concerns and addressed them.
Losing our medical team…
Overnight, literally, we lost that team and were expected to have a new team assembled and ready to go. Not only that, we had to do it on our own, because no one would give us referrals or recommendations.
This is a really stressful time for parents because finding specialists is HARD because it can sometimes take months to get in for a consultation, to see if they are going to be a good fit for you and your family.
We got lucky and our pediatrician said that he would retire before he turned us loose, and he isn’t planning on doing that for another 15 years or so. Thank goodness!
Guardianship & alternatives to guardianship
The other question that comes up in parents’ minds is “Do we need to get guardianship?” That is not a question that I answer for you. If your child is verbal and pretty independent, you may not need full guardianship but you might need an alternative such as a medical power of attorney, or you might not need anything at all. Here is a great article from the ARC of Texas with information about guardianship, alternatives to guardianship, and power of attorneys.
To Lawyer up or not
If you think you might need to get guardianship or an alternative to guardianship in place, you are going to start planning for this 6 months to a year ahead of time. Longer if you need to save up the money for it. Yes, these things have court fees we have to prepare for.
For our son, we needed to get full guardianship and decided that we would just rather pay a lawyer to manage all the legal mumbo-jumbo than try to figure it out ourselves. If this is what you are planning on doing, be sure to include time to interview a lawyer in your timeline.
What to do
Everything I ever heard said to file for guardianship about 6 months before the person turned 18. I talked to our lawyer at the time and for our county, he said we didn’t need to file that far in advance. This can vary from state to state and county to county so be sure to check into that for your area.
For us, the process wasn’t bad. Yes, we had to fill out some tedious paperwork, and a court-appointed visitor had to come to our house and “talk” to our son (our son is non-verbal so it was a one-sided conversation – LOL!).
The court visitor gives your home a casual once over. This part ticked me off because the guy was in our house for maybe 5 minutes and in his report, he stated that our house needed ‘major repairs’. To this day, it still bugs me because I have no idea what those ‘major repairs’ were! GRRHHHH!
But as long as your home has not been condemned and there are no signs of abuse, there shouldn’t be a problem, it’s just a little nerve-wracking.
After the report is filed…
Once the court-appointed visitor submits his report, then it’s just a waiting game until the judge signs off on it.
Once we received the official guardianship papers, I made a couple of copies of them before sticking the original in a safe. I also scanned them and keep a copy in my computer and a copy in my phone.
I know, I know, having it in my phone is not the safest thing but I have needed to show proof of guardianship when my son was hospitalized, and whipping my phone out was easier than carrying around a piece of paper.
ABLE Savings account/Special Needs trust
Not that you have to have guardianship or anything else to do this, but now is also a good time to start planning for their financial future if you haven’t already. One thing that a lot of families take advantage of is an ABLE Savings Plan. This is a tax-advantaged investment account for your loved one. Here is the link to the ABLE National Resource Center for more information.
One thing that I was not aware of, and I had attended a couple of webinars on it, was that ABLE Saving Accounts are essentially investment accounts. The money that you put into the account isn’t just sitting there waiting for you. It is actively being invested for you and you get to pick high/medium/low-risk investments and how much. I am fine with that but hadn’t been expecting it.
Supplemental Security Income (SSI)
Depending upon your family and your loved one’s circumstances, a lot of people apply for Social Security Benefits for their loved ones when they turn 18. I am not really going to go into that whole process here but will share a few tidbits of information.
In the instance of my son, he is severely disabled, not able to communicate wants and needs or hold a job. Because he is not capable of working or has ever held a job, we applied on his behalf for Supplemental Security Income (SSI). Social Security Disability Income (SSDI) is for those who are disabled and have work experience. This, of course, is a very simplistic explanation. Here is a link to the National Council on Aging that has more in-depth information.
I learned when applying for SSI for my son, that we could not go through the Social Security Association’s website. We had to call and schedule an appointment to start the application process. Here is the link to the Social Security Administration where you can create an account and contact your local office.
After your application has been submitted, they will want to do an interview with you or whomever is guardian, or your loved one if they are their own guardian. One thing came up in our interview that I was not prepared for. We were asked if C-Bear was going to continue to live with us (Duh!). If yes, were we going to be charging him for rent and utilities, and how much? We were cautioned that if we were going to be charging rent and utilities, it needed to be ‘a reasonable amount’.
To charge rent and utilities?
SSI is used to help someone pay for their basic necessities such as rent and utilities, so plan for this. Research what the average rent is in your area for how many rooms your loved ones will have to themselves. Factor in what their portion of the utilities would be.
To be honest, I was not prepared for this question and probably vastly undervalued it. I can go back and change that at a later date but… paperwork… ugh!
Note: If you are going to charge for rent and utilities, be aware that this can be considered income for you when it is tax time.
If you have guardianship or are managing your loved one’s money, you will be called upon to do yearly reports. Both to the court and possibly SSI about how that money was spent. Keep all receipts. You have to keep the financial records up to date so you are not scrambling at year-end.
Employer vs paid parent provider
One other consideration we had to make when C-Bear turned 18, was whether we, as parents, wanted to become his paid providers. Meaning, his paid caregivers. Currently, here in Oregon, parents of minor children can not get paid to provide caregiving services to their kids. That is considered a natural duty of the parent.
Once they turn 18, the child-now-adult has the option of requesting that the parents become part of their paid staff. There are pros and cons to both sides of this situation. My husband and I talked about it but at this time, it’s not something that we really want to do. Just because I feel like talking about this, here are our reasons.
Our reasons for NOT being a paid parent provider
- We want to be the parents and just the parents. Not the nurse, CNA, Physical, Occupational, or Speech Therapist, and not his paid staff.
- Our son has things that need to be done on a consistent basis that we butt heads on. Such as being in his stander every day or doing his leg stretches or feeding therapy. I hate having those fights with him and feel that it puts a strain on our relationship. I would rather delegate that task to someone else and make them be the bad guy! 😈 I want to be able to do things with him because I want to, not have to.
- My son has enough hours available that if we chose, my husband and I could work full time for him. That would be 80 hours a week between the two of us. Yes, having that extra money would be great but…:
- We could no longer be the employer so we would have no legal say in who was hired to support our son.
- We could not train or schedule the staff. That would be considered a conflict of interest and assuming the role of the employer.
- If one of us weren’t the employer, we would have to find someone outside the family to take that on. We don’t have any family members nearby.
- Being the employer of record is an unpaid job. Would anyone outside the family be willing to take all that on? It’s not just signing the timesheet but recruiting, interviewing, hiring, scheduling, training, verifying timesheets, and terminating. That’s a lot to take on.
- We could no longer be the employer so we would have no legal say in who was hired to support our son.
- A caregiver’s ultimate function is to work themselves out of a job. In an ideal world, they would be able to work with our loved ones, teaching them to be independent. Our kids would be able to survive out in the world on their own with no help. If my husband and I are working a total of 80 hours a week for C-Bear and that was the sole source of our income, how motivated would we be to make him independent of us?
- We are used to being in charge of our kids. But when your kid becomes your employment, your boss, that can put a strain on the parent/child relationship. I have seen some families handle it beautifully. I have also seen some families that didn’t, and some of the parents ended up facing abuse charges.
Our backup plan
These are just our reasons, and to be honest, we didn’t always feel this way. LOL, but now that we are old and tired, this is our stance. If someone asks, I say that C-Bear is my backup plan.
I have PLENTY of hours that I am “on shift” with C-Bear. But it is by choice, not because it is time to clock in and go to work.
Enough about that. It is a hot topic and there are strong proponents on each side of the wall. I can understand each point of view but I am here to provide information, not stir the pot.
I wanted to write this post for those families that are nearing the transition age. To help them with planning for the transition to adulthood, at least a little bit.
If you have any other tips that you would like to share, please leave them below! Transition feels like a big black cloud looming on the horizon to most families. Tips and information from families that have already gone through it are greatly appreciated.
Other related articles that you might be interested in:
Why You Need Procedures and Protocols for Caregivers
How To Protect Your Medically Fragile Child