Navigating the Complexities of Self-Direction in Medicaid Waivers: Planning for the Future
Understanding the Responsibilities and Challenges Beyond the Lifetime of Parents
Recently I had a conversation about who would take over “self-directing” a child’s Medicaid Waiver support when the parents died. There was a belief that the Trustee would be able to take over. It’s possible to have a Trustee help an individual with self-direction, but it’s not a “Trustee duty”. Rather, it would be one person filling multiple roles.
I’m seeing more and more parents who are choosing to use this option because of the increased flexibility, and control, it gives them. Not to mention the ability to be paid as staff when serving as caregiver. It’s true, you have more say in who is working with your child than you would if they were getting support from an agency. And you may be able to offer a higher wage than agencies can.
But it’s not all sunshine and rainbows. I’m guessing more than a few have not thought beyond their lifetime. I have some pretty strong feelings about self-direction. Having tried it, and left, I don’t believe it’s the right solution for everyone.
In my opinion, it works best for those who can actively advocate for themselves. Individuals who participate in developing their Individual Service Plan and who can communicate how they feel about staff. The person receiving the support needs to be engaged in the process.
In theory, after a parent passes, I suppose someone could follow a very well-written Individual Service Plan (ISP) and provide continuity for an individual with disabilities after their parents die or can no longer fill this role. I say “in theory” because it can become a full-time job. Whoever is going to be asked to step into this role needs to be made aware of all the responsibilities. Not to mention making sure the ISP truly reflects an individual's needs and wants, not only the parents’ perspective.
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