[carolyn-a-anderson]

My son is 40 with SMA 2. It is hard for him to do too much typing, but we both felt we needed to respond. Kevin has a trach and part-time ventilator. He uses nurses.

IN Ohio, almost everyone with specialized disability-related needs is on a Medicaid Waiver Program that will pay for aides/nurses. Everyone has the option of using an agency or going through independent providers. We all recently lobbied our state legislature for an appreciable rate increase. Many went to testify in person or submitted written testimony. Aides and nurses both got appreciable increases — 30%. That has probably been one of the reasons, we are finally seeing more providers.

So adults who are on Waivers, will go through managed care organizations. There is a Medicaid Site both providers and recipients can sign up for. Also Independent Providers also have their own site for providers and recipients for searching..

It is not a perfect system. However, there are options available to hook up with the appropriate providers. His schedule will always have holes, but it has gotten better.