Caregiver Planning
A few months ago, I attended a conference session about caregiver planning. It was a session provided by an insurance company that was informative, but lacking a lot of details. Since then I have talked with several parents about their plans and how they are preparing for their child’s future - mainly when the parents will no longer be on this earth. I don’t want to this blog entry to be a downer, but it’s something that we all need to think about, whether your child is 5 or 25. This group of parents shared a lot about their fears, their anxieties, their existing plans, and ideas on how we could support other parents. Planning for your death is overwhelming, but planning for it for a child with a disability is even harder. I would rank this as probably one of the MOST challenging things we face as parents. Recently, I was talking to a parent who said, “with my older son, I feel like I’m still his mom, but with my daughter, I feel like I’m just preparing her for my death.” It was a sad moment but it was so true. As hard as we work with our kids to help them be successful, ultimately, we are preparing them for life without us and life with another caregiver.
We all know this is hard. It’s never easy to think about our children living without us. Who will be their next caregiver? How will they know how to soothe them? How will they know how to prepare them for certain events (the dentist, the doctor, etc.) How are we supposed to get it down for someone in the event of my passing? It is almost too much - but guess what? We MUST do it.
Here are some ideas for you to consider:
First and foremost, this is a big deal. Take your time with it and take one step at a time. It is important to have a lot of conversations with your family, close friends, service providers, and medical professionals to start collecting information about what they are willing to assist with.
Download some resources. Google is awesome, but also overwhelming at times. Here are a couple of resources that can help you get started. One created by parents in our community and published by The Arc of Bartholomew County. You can download the resource at https://www.thearcbc.org/resources-and-tools/caregiver-planning. Another resource that is great is from the University of Arizona https://sonoranucedd.fcm.arizona.edu/sites/sonoranucedd.fcm.arizona.edu/files/CAREGIVING_Roadmap_021010.pdf. I would highly recommend looking at both of these and determining what you would like to include in our caregiver plan. Some things may be relevant and others might not be. There could be other things that you need to include also.
Get a binder or folder. Collect all the necessary copies of documents, pages, notes, and create yourself a booklet. Make as many copies as you need so that the important people know what to expect. I would even scan them electronically to keep. It’s nice to do things electronically so you can easily make changes too.
Set up a special needs trust. I cannot stress this enough for parents. Any money that your child inherits should be placed into a special needs trust so that they don’t lose their benefits. You can do this through an attorney, or you can use The Arc of Bartholomew County group to help. You can find info about The Arc Master Trust at https://www.thearcbc.org/resources-and-tools. You can also find information about guardianship and more there too.
Help your successor so they don’t have to jump through all the hoops. Help them understand how to navigate the Waiver, Social Security, etc. by giving them the information. Think how long it took US to navigate all that - if only we had a guide!
If you are still not sure where to start - start journaling about what you do for your child on a daily basis. Journal for one month and write down EVERYTHING. Appointments. Meltdowns. Soothing techniques. Food habits. Outings. Get a sense of what someone else would need to experience if they stepped into your shoes.
AND IF YOU STILL AREN’T SURE HOW TO START….let us know. We would be happy to host a working session for parents to work on this together if there is interest. We are all in this together and we all understand and empathize with each other’s stress. Email us at columbusautismnetwork@gmail.com or if you are part of the Facebook group, reach out!
IF YOU ARE A PARENT WHO HAS ALREADY GOTTEN THIS IN PLACE - let us know that too! We’d love to learn from you!