September 8, 2009
Lauren has been receiving services through New Jersey's Real Life Choices Program and the Medicaid-funded Personal Preference Program for a little over two years. Both are designed as self-directed services. Of course, for a young woman with a minimal ability to truly communicate in any typical manner, you might think that self-direction is a bit of a misnomer. Is she truly directing her services? Absolutely. But that direction is seriously dependent on my ability to interpret her wishes and desires. George is always involved and interested, but when it comes to planning, development, and management, it's my job.
And, it is a job. My perspective of self-direction comes from our particular circumstances of helping a young woman with severe, multiple disabilities self-direct. If you intend to help someone with Lauren's level of need you will require many skills and need to have much time available. You will probably want to hire caregivers. (I'll talk more about that in a later post.) You will need to understand job applications and their accompanying forms, as well as make sure time sheets are accurate and are submitted on time. You will need to understand and participate in managing a budget based on your funding level, and interact with a coordinator and fiscal intermediary. You will supervise staff and be in charge of scheduling. You will need to develop and oversee activities, opportunities, and arrange for appointments, substitutions, and meeting everyone's varied needs. In other words - you will need more skills than you have ever needed to meet the care needs of your child.
Why do I do it? Sound like just too much work? Well, first of all, if we did not participate in these self-directed programs, we would be providing all of Lauren's care ourselves. At this point in our lives, that is not physically possible. As far as other available services in NJ, there are none at this time. Secondly, I believe in the concept of self-direction and that ultimately it will provide Lauren with the life that she wants and one in which she will receive the most appropriate care. The system under which self-direction is now taking place in NJ needs refining and general attention. But, it offers great promise. I believe this is the right path for our family to take. My foremost concerns are for the future - when I can no longer help Lauren self-direct. There is no one else in our lives that can take over this role. What will the future hold?