December 10, 2009
If you are receiving self-directed services in New Jersey (Real Life Choices program) you will have a support coordinator working with you to assist you in formulating a budget and plan of care that meets your needs or that of your family member, within the parameters of your budget. Our support coordinator has also been very helpful in resolving issues with the fiscal intermediary, answering questions on a myriad of subjects, advocating for Lauren where necessary, and being a sounding board when I need to vent. For now, this works for us. But how can this work when Lauren needs more help self-directing than I may be able to give? Will self-direction end for Lauren when I am too sick, too old, or too...dead to provide the supports that are not in the support coordinator’s job description?
Lauren will need someone who can be responsible for hiring, firing, supervising, and developing schedules for staff and arranging substitutes for time off. Someone will have to oversee the timely filing of timesheets. Someone will have to make sure that her housing, food, insurance, utility, transportation, and personal care needs are met. Someone will need to make sure that she has appropriate medical care. Someone will need to manage her finances. Someone will need to make sure she is living a fulfilling, safe, and connected life.
The responsibility for all of this need not fall on one person. If the support coordinator could oversee the “business” end of Lauren’s self-direction, perhaps a family member or friend could oversee the more personal aspects of Lauren’s life and serve as advocate for Lauren’s quality of life. If support coordination could be structured into levels of support it could help smooth the way for self-direction to continue, as the ability of family members to participate in the process wanes. Support coordination could increase as needed. In the long run it must be more cost effective and more humane to provide additional support coordination than to end an individual’s self-direction in order to meet their care needs. Why change an individual’s way of life just because their family’s abilities change? Why saddle them with double the loss – the loss of a family member’s support and guidance and the loss of the life they enjoy?