From Suzanne Muench, MSS, LCSW, Sibshop Facilitator
For those parents who may have children with special needs that are getting older and moving into transitional or adult level services, here are a few things to consider:
Invite siblings to be involved in small caretaking roles such as short respites, attending meetings, and providing input into what their siblings like or do not like. If they do not want to attend in person, maybe they can offer suggestions ahead of time. For example, the sibling might have insight into what the other sibling might like or not like, especially if the sibling is not able to appropriately make their needs or wants known. If they do not want to participate, let them know that is okay, and that you would be open to hearing their feedback and suggestions, when and if they are ready.
Consider keeping a notebook with important information about the care needs of the siblings. This might include contact information for current service providers, the annual plan, pertinent medical information, etc. Having this information readily available for those left behind can be very useful in a stressful time.
Make sure your own will and financial affairs are in order, and share this information with your other children. These things not easy to talk about, but they are even more difficult to deal with in the midst of grief. The time immediately after losing a loved one, especially a parent, can be disorienting for everyone, and having this information sorted out and available will make the process a bit easier on everyone.
Keep an open mind about future living arrangements for your child. While you may want to care for them at home forever, this may not be a reality. We know that what services and supports are available in an emergency situation are not the same as what can be available when a move to long term care is thoughtfully planned out. Additionally, availability of services and funding for those services can have lengthy waiting lists; therefore, the more proactive a family is about this planning, the better. Having families involved in these decisions early on, may also help the young adult with special needs to feel as if the transition is "okay" with the family. This, in turn, can give siblings further permission to naturally move on in their own lives, to be able to experience new things without feeling like they have this large responsibility looming over them. Consider these transitions to be similar to the experience of going off to college or moving into their own apartment. If appropriate for your child, making these arrangements, sooner, rather than later, can help assure that when the time comes that you are no longer available to manage their care, plans are in place. Involving siblings in these decisions can give them a better handle on what their role and responsibility might be, once you are no longer able to be involved. If appropriate, there are also legal options for siblings, such as becoming a legal guardian, or Power of Attorney.