What You Need to Know Part II

When Do You Get Siblings, Caretakers Involved?

The siblings of your special needs son or daughter may be too young to get involved at this time, but this will get you thinking about the future. Sibling groups may be a good way to get started. It doesn’t have to be a sibling; it could be an aunt, uncle, or another person whom you see taking on this role in the future.

Unfortunately, my parents passed away within a short period of time before they shared these responsibilities; we did not have a transition. If we had started this planning and had known where all the information was kept, it would have been significantly less stressful. My parents were organized, but the information was all in their heads. We are still digging to find important information that we will need in the future, from medical records to paperwork (the paperwork is never-ending), medications, caseworkers, and many more items I can’t even remember but am still trying to gather.

How were we supposed to know that the Mass Health application was overdue? We didn’t know you needed to apply for this each year! Who is taking care of this? This is just one example of something that needed to be done that we did not know about. This created significant stress for my brother and sister. We were all trying very hard, but even with three of us, and our spouses, it was overwhelming. We worked very closely together, but it was frustrating because we were also dealing with our own families, jobs, and responsibilities; we were forgetting to follow up on items; and we didn’t know who was doing what. Everything became a last-minute rush to get it done because we were just finding out about it.

We needed to find my sister’s contacts, including doctors and case workers, and her medications, among many other things. We were running all over the place trying to piece it all together. When we went to the pharmacist, they could not refill her medication. Why? They said that we needed to call her doctor to get it refilled. Which doctor? Once we got in touch with the doctor, they required us to set up an appointment before they would refill it. Her doctors were located anywhere from Lexington to Boston. My parents were retired and had plenty of time to drive into Boston for medical appointments.

My sister had a different doctor for each medication she was taking; therefore, we were trying to find names and numbers for six doctors: 1. Primary physician, 2. CPAP machine, 3. podiatrist, 4. dermatologist, 5. diet manager, and 6. dentist. At the time, there was an ongoing issue with all of these specialists and we needed to bring her to each of them immediately. We didn’t have any information about where they were all located or any baseline data; it was all in my mom’s head.

Shortly before my mom passing away, I called my sister’s counselor to check in and let her know about our situation. The counselor stated that she was moving and was ending her services at the end of the month. My sister’s DDS case worker was excellent, and he immediately contacted me to offer support, but he said he was retiring in one month. My sister’s SSI checks stopped being deposited, and we needed to go through the process of implementing a new payee for her account before they would issue the checks. I did not even know what a payee was. No one told us that when the current payee—who, in this case, was my mom—passed away, the SSI checks stop immediately. How can all this happen at the same time?

This was the beginning of a list of problems as siblings and guardians that we would need to figure out on our own. These were the problems we needed to solve both in the short term and the long term. For parents expecting their siblings to take over responsibilities, it is much more complicated than just assuming that they can do it on their own. Even if you have all the information in one place, just the paperwork, doctors’ appointments, and coordinating transportation can be overwhelming.

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