The state of Ohio has a plan in place to eliminate independent providers (IPs) under Medicaid and only allow agencies to bill for Medicaid services provided. This change is being promoted by Governor Kasich, and he plans to phase out IPs beginning in 2016. For families of medically complex children, this change is devastating and unacceptable. From his seat on high, Governor Kasich is unaware of the daily challenges faced by families of medically complex children, and it is both tone deaf and irresponsible for him to impact not only our choices, but also the health and well-being of our children.

In order to provide the care we have needed for our son, we have worked with both agencies and IPs. Agencies have often been unable to meet our needs for staffing the case, and have at times severely mishandled our son’s case, causing us to depend more heavily on IPs. Many agency nurses operate with a minimal level of oversight, much different from the elaborate audits that IPs endure to ensure that they comply with all laws and meet the standard of care for their cases. Herding families to agencies almost certainly ensures that fraud will increase, as agencies have little capacity to absorb the influx of IPs who will need jobs. These understaffed and under-resourced agencies will likely take shortcuts on managing the care provided by nurses. The community of providers for medically complex children is rather small to begin with, so eliminating the ability to select IPs puts families at the mercy of agencies that skate by, doing the least amount necessary to retain their certification. Eliminating independent providers reduces choice, especially in areas where few agencies exist or where the quality of those agencies is questionable.

As many parents know, agencies are often hiding places for bad nurses who hop from one agency to another, while IPs survive on the strength of their own skills and experience. Good and bad nurses can be found in both independent and agency settings, but in my experience, agencies are likely to hire nurses with lower levels of skill and sketchy employment backgrounds just to staff a case and earn money for the hours worked. On the other hand, IPs have to campaign and interview for each case they take on, so families select these nurses based on their needs and the match with the nurse’s qualifications and skills. IPs are also tasked with keeping immaculate records and notes; as any IP will tell you, even the slightest error costs them dearly, so they cross their t’s and dot their i’s. This attention to detail is often apparent in their work with medically fragile children as well. The problem is not always with the nurses; we work with some excellent agency nurses. Sometimes, the problem is with the agency itself, which can be far more frustrating.

When our son was first placed on the Home Care Waiver, we only used one agency. That agency was unable to find nurses to cover all the hours we needed staffed and frequently made errors in scheduling that resulted in us having to stay up all night unexpectedly or not have nurses when we needed them, so we began to work with a second agency. The second agency did not follow the law in terms of setting up and overseeing the case, and one of their nurses committed an MUI in our home; the agency failed to report the MUI and did not subject the nurse to corrective action. These issues caused us to look for IPs. Three years later, the first IP we ever hired still works in our home. Since then, we have gone through multiple staffing changes, but IPs remain a stable source of quality care for our medically fragile son. We work with two agencies, neither of which can adequately staff all the hours we need for our son’s care, so half of his nursing hours are covered by IPs.

Eliminating the choice of IPs means that many families will not be able to find nurses to care for their children. Medically complex children are already at greater risk of institutionalization, abuse, neglect and death; further stressing their families, many of which are already on the edge in terms of resources, is likely to increase those risks. Inclusion is a right, and creating circumstances that increase the likelihood of kids being placed away from society in institutions and other care facilities constitutes a violation of that right. Governor Kasich is simply setting himself up for a class action lawsuit on behalf of all families of medically fragile children, and I’m sure that Disability Rights Ohio is already preparing for a fight.

This decision by Kasich must be reversed! Our children deserve the best possible care, and we as parents are the experts in selecting that care, not the government. The Ohio Association of County Boards is seeking opinions on Kasich’s decision, and a MoveOn.org petition is being circulated to object to the decision to eliminate IPs. Use your voice to support medically fragile children and their families.