Updates
1. To all ForeverParent contacts, I will be changing my email to Patric.barbieri@gmail.com starting immediately.
2. I will use this blog as my home page for all ForeverParent communication and I will be writing bi-monthly articles. (ForeverParent Blog)
Reunions, What I Have Learned, and Recommendations
My sister turned 47 in August, and this past fall, she attended her high school reunion. She has attended her reunion every year since she turned 22 in 1998. The only exception was during the COVID years.
The day before the reunion, I brought her to two doctor’s appointments. While sitting in one of the doctors’ offices, I had a flashback from seven years ago. I was in the process of acquiring guardianship of my sister, but it wasn’t complete; therefore, I couldn’t speak directly with the doctors about her health. I implored the doctors to talk with me. I tried to explain that my parents had passed and I was acquiring guardianship, but they said they couldn’t until I had proof of guardianship. Secondly, I didn’t know when I had to fill out her MassHealth forms; it expired, and her SSI payments were stopped as they were connected. I contacted the Social Security office to reinstate her SSI, but they would not speak with me. This was an arduous process to get this back in place. What did I learn? I should have started the process of acquiring guardianship while my parents were still living, but we were so focused on their care that I didn’t even think of it.
Recommendation: Consider whether guardianship is appropriate for your son or daughter. It is not always needed, but you should evaluate what is best for your family. For our family, guardianship was essential, and when I was trying to understand all my sister’s needs, this was highly frustrating).
Since being involved with ForeverParent two years ago, I have spoken to many families and learned quite a bit. Helping families prepare for the future was a personal mission because I experienced it. I learned that everyone wants to plan for the future but needs help getting started. It is emotionally paralyzing, and they put it off.
Secondly, I learned that independent living is the most important and most challenging action to put into place, but it will be the most significant action in helping families bring them peace of mind. I can empathize with the difficulty of letting go, but we do not want to miss the opportunity to be part of the decision. One family told me recently that they spoke to an agency, and they said, “If you are no longer here, we would be responsible for placing your son or daughter in a home, but we don’t know where that will be.” They are telling you the truth.
Recommendation. Learn about independent, group, and shared living options. Start as early as possible; this will be a significant part of planning for the future when you are no longer here. If your son or daughter is living at home and the same situation happens as my family’s, would a sibling, friend, or extended family member be able to care for them in their home? This would not be a long-term solution, but the burden now would be on this person to figure out the options.
When we took over the care of my sister, I didn’t know where my parents kept any of my information. Who and where are her doctors? Who is her nutritionist foot specialist, who prescribes her medications? Where was the financial information, among so many other items? It took about a year and a half to figure out everything my parents did. I was lucky she was living in a group home, and I knew what needed to be in place because I had worked in special education for over 30 years.
Recommendation: Start writing down everything you do. Include phone numbers, addresses, and direct contacts. You will be surprised how long this takes you to complete. Many families I know have started it but have yet to finish it because it is not urgent. Remember, you burden anyone who will need to do what you do by not doing this. Someone will have to figure it out. My parents didn’t give me the information because they didn’t have it; they didn’t want to burden the siblings. Unfortunately, this backfires.
Bringing Your Family Peace of Mind 