Between the typical hands-on tasks of being a caregiver, there are also the logistics of arranging all other necessary supports. Many people refer to this as life administration. Everyone spends at least a little time with life administration tasks, but those tasks can take up a large chunk of time for family members of individuals with intellectual or developmental disabilities (IDDs).
Life administration for people with IDDs describes the behind-the-scenes work necessary to ensure the supported individual thrives in their personal life. Many people think of life administration tasks as chores, but life administrators for individuals with IDDs often report that the role feels like a full-time job.
Some common tasks for life administrators of people with disabilities include:
These life administration and management tasks exist on top of day-to-day caregiving responsibilities. Siblings and other family members often feel burned out if they do not receive adequate outside support.
Yes, siblings may receive compensation through the Self-Determination Program, but some limits exist.
For a little bit of context, consider that more than one million aging caregivers in the U.S. today help look after individuals with IDDs. These caregivers are, more often than not, seniors who care for their adult children. As aging caregivers become unable to support their children with IDDs, siblings are often called upon to step up.
As these adult siblings assume life administration services, the good news is that they can receive compensation in many circumstances. The key is to justify the compensation in the IPP or person-centered plan.
For instance, life administrators can demonstrate that scheduling activities for their siblings helps them maintain a social life. The IPP should highlight that participating in community activities and forming friendships is a key objective for SDP participants. For further payment justification, siblings could connect the scheduling task with the SDP’s Community Integration Supports service definition.
Sometimes, the definition of life administration for individuals with IDDs falls under natural family supports, which are tasks that loved ones are simply assumed to take on. Some of these natural tasks include general advocacy for their loved one, and others that apply to the ever-important circle of support.
Siblings’ life administration responsibilities often overlap with big-picture issues handled by the circle of support. It’s not always obvious which tasks can be attributed to the circle of support and which ones might be eligible for payment under the SDP.
Taking on a more active role in your sibling’s life administration might seem a little overwhelming right now. Trying to understand everything about the SDP and other government programs might also seem mentally taxing.
The good news is that an independent facilitator, paid for through the SDP, is available to help guide SDP participants and family members through the process. NeuroNav is a leader in the SDP independent facilitation space and has a wealth of experience advocating for individuals with IDDs.
We’d love to chat with you about unlocking your loved one’s true potential and helping them achieve their dreams through the SDP. You can schedule a consultation or reach out with any questions.