Writing it all down!
If your child is not living in a home, have you planned for this? Who is your child going to live with if something happens to you? Are you thinking, We have plenty of time to worry about this? These questions can be paralyzing for a family, as you cannot even begin to think about the items you will be responsible for if you haven’t started this discussion.
• Group home meetings: Attend four times a year.
• Doctors’ appointments: Who arranges this and gets all the details? We put together a Google calendar of all yearly appointments. Who will drive them there and get all the details?
• Medications: Who will be responsible for making sure they get refilled every month?
• Mass Health forms: This needs to be done every year.
• Mass Health dental coverage: This plan has limited dentists. My sister and my parents went to the BU Dental Center. It would be impossible to bring her into Boston for dental appointments. I looked around for dentists, and most do not take Mass Health. We need a dentist who is local to her community. Many parents have their son or daughter on their insurance.
• Allowance: My sister needs someone to take money out of her account and make out weekly envelopes for allowance every month. For special events, she needs additional monies dropped off at her house.
• Phone management minutes: She needs minutes refilled every two months. There is always a problem with her phone. There is a plan that can give her free minutes, but the work to get it implemented is just not worth the time and aggravation.
• Managing her weight: This is an issue that we need to watch constantly.
• Going to house parties: We need to be involved, be engaged, and be a part of her community. We need to be present at her house gatherings and parties.
• Special Needs Trust: This is an easy one, but you need to know how it works and who is responsible for it.
• Karate: My sister has been taking karate for 20 years. Who is going to take her and arrange transportation?
• Special Olympics: She competes in bocce and goes to practice every week when they are getting ready to complete. How does she get to practice and events?
• Who is the payee for her bank account?: This person needs to monitor monies that come in from SSI and go toward her group home fees and her living expenses.
• SSI payment reconciliation: Who will be responsible for doing this every year? Technically, the payee will need to report how the funds were spent.
• Bank account: Who is going to check it every month so it does not go over $1,800 as per the SSI regulations?
• Group home cleanup: Her group home closes for two weeks two times per year for cleanup. Who is she going to stay with during this time?
• The Ride: This is a very good option for transportation, but you need to monitor them. We set this up for my sister to go to karate, but they were constantly showing up late and she was arriving 30 minutes late to the class, or sometimes they would drop her off an hour early! This did not work. We ended up driving her, and then we arranged transportation for her to and from karate with a parent from another group home. We were lucky this parent offered this.
• Safety, safety, safety: This is the biggest fear. I didn’t worry about this until I took guardianship. I didn’t think much of it; my parents did. We constantly talk to my sister about what she needs to do. I still hear from parents whose son or daughter graduated from LABBB and what they are experiencing, and safety is always a concern. There is too much to discuss in this article, but the same elements, such as bullying and harassment, which we discuss in school are going to occur, and I have had to intervene on a few issues already that have happened over social media.
I have developed a spreadsheet that I have been building over the past year of every doctor, case worker, and anyone who is involved with my sister’s life. It is a good idea to begin planning now by putting it down on paper. Write down anything that you can think of that someone would need to know. It will evolve year after year, but this information will be paramount. Every month, I learn something new, and I add it to the sheet. If she needs a release form for the Special Olympics, no more guessing; I know which doctor the form needs to go to and where to bring it. I need to sign her up for karate four times a year, and now I know where to send the check and form to. She just asked me to sign her up for a flag football team. Where do I sign her up? Who is going to drive her and pick her up?
Finally, my sister is part of a community that knows her. This community has taken years to build. She lives with peers who all attended LABBB. These families were very engaged and proactive when they were in LABBB, and I knew them well. All the group home members are seen around town, and this has made a significant difference in their safety and support. In difficult times, this group home is going to be the most important part of their lives. I can’t emphasize this enough. At the time of this writing, one of the parents in the house just emailed me and said that she arranged transportation and set up overnight accommodations for her housemates who are attending Special Olympics this weekend. What a relief this was! I did not know how we were going to arrange this. Working with a network of engaged parents is essential.
Use this information to go through a simulated, real-life situation if you need to get it in place in a few months. Are you prepared? Are your son’s or daughter’s siblings prepared?
I am open to talking with anyone at any time if you are interested in starting this conversation with your family. I can meet with you to help you facilitate this discussion and offer my experience and knowledge. It changes the lives of the caretakers, siblings, and guardians when these events happen. Start planning now. Do not wait.
If you know people who can benefit from the information in this article, please share it with them.