MFTD Waiver Families

Support for families of children in the Medically Fragile, Technology Dependent Waiver

Testimony to House Committee on Medicaid Managed Care

One of our members spoke today to the House Appropriations-Human Services Committee on the potential effect of Medicaid managed care on children in the MFTD Waiver. You can read the testimony below or download it here.

Statement on Medicaid Managed Care for Children who are Medically Fragile

My name is Susan Agrawal and I am the mother of Karuna, a child with complex medical conditions who was part of the Medically Fragile, Technology Dependent Medicaid Waiver for 8 years until her death in 2014.

I am here to speak about the potential effects of Medicaid managed care on children who are medically fragile and require medical technology such as ventilators, tracheostomies, feeding tubes, IV nutrition, and oxygen. They are extremely fragile, and their lives depend on precise medical management.

I would like to focus today on two main concerns:

  1. The state’s lack of preparation in ensuring MCOs can adequately and safely care for children who are medically fragile.
  2. Potential issues, such as network inadequacy and reimbursement rate reductions, which could profoundly limit access to quality healthcare for these children and many others throughout Illinois.

First of all, it is almost entirely untested to put children with this extreme level of medical complexity into managed care. Only a handful of states have even tried it, and most have experienced unanticipated negative outcomes. But in these other states, Medicaid state agencies have at least consulted with experts and families about safely transitioning children into managed care. Not in Illinois. Neither pediatric providers nor families have been consulted. Even DSCC, the entity that currently provides case management for these children, is out of the loop.

There are no specific plans to ensure children will have safe access to the durable medical equipment providers who supply their ventilators, oxygen, and feeding pumps. There are no plans to ensure children will continue to receive their home nursing. The contract does not require any specific networks of pediatric subspecialists, potentially leaving thousands of children without access to pediatric specialists in GI, respiratory, or neurological care.

If children who are medically fragile do not have access to medical equipment like ventilators and services like home nursing, they cannot live at home. Instead, their only option is to be hospitalized -- at $56,000 per month. That’s three times the cost of caring for them at home. And an ICU is no place for a child to live.

The children in this program are already struggling, even before managed care. Reimbursement cuts over the past 5 years have led to widespread problems in accessing care and services. For example, most families only receive 40-75% of their approved nursing care hours. Families have already seen a decline in the quality of the medical supplies they receive. IV dressings have been replaced by cheaper versions that don’t stick, which resulted in multiple superbug infections for a child named Kendall. Diapers are restricted to the cheap plastic styles that don’t hold anything, forcing children to sit in pools of their own waste, causing rashes and infections, and allowing waste to flow into feeding tube and IV sites. Some items have already been eliminated, such as sterile water for ventilator humidifiers, leading to hospitalizations for respiratory infections in numerous children.

This is before managed care. Once managed care is in place, we expect things to get much worse, particularly when it comes to medical supplies and equipment. One of the MCO awardees, IlliniCare, has already announced that they will only reimburse medical supplies at 50 to 90% of the state’s current rates, which have already been slashed repeatedly. These rates will force many providers of these supplies to end their contracts with IlliniCare.

Making matters worse, there is an exclusive contract with IlliniCare for all DCFS children. Since many children who are medically complex are either current or former foster children, this contract will have a tremendous impact on these families across Illinois. And unless HFS takes action to stop IlliniCare’s rate cut, even families with a choice of MCOs can expect other MCOs to follow IlliniCare’s lead.

For example, feeding tube supplies will be paid at 70% of the current rates. These supplies are paid for on a per diem basis, which means that companies must limit supplies to keep costs below the daily maximum. If the daily rate is reduced under IlliniCare, children may no longer receive critical nutrition supplies, such as syringes, formula bags, or feeding tube extension sets.

Even more concerning is ventilators, which would also be cut to 70% the current rate. Ventilators are rented on a monthly basis, which includes regular equipment checks and monitoring by a respiratory therapist. Rate cuts mean ventilators will be checked and serviced less frequently, and ventilator supplies will be restricted. When ventilators are not serviced appropriately, they malfunction and children die.

Finally, there is the issue of network inadequacy. Currently, children who are medically fragile are limited to an already small number of agencies and suppliers that have been prescreened to care for complex, pediatric patients. My most recent list includes 36 nursing agencies statewide, and 26 medical equipment providers. Children such as Cohen in Mokena or Christopher in Vermillion County only have access to one provider as it is. Many of these are small, independent companies who specialize in pediatric complex care. They cannot afford the kinds of rate cuts proposed by IlliniCare. Many will simply have to close their doors or stop taking Medicaid.

It is exceptionally challenging to care for children like my daughter Karuna under any circumstances. I worry about the thousands of children who enroll in IlliniCare early next year, and find they can’t get the supplies they need from the providers they trust. Imagine waking up one morning and suddenly losing your equipment provider and nursing agency. You need to get a new ventilator, new IV pumps, and new supply orders from your doctor. You need to find all new nurses. You may even lose the specialists who have cared for your child for her whole life. If this happens, children will end up living in the hospital. Children will probably die.

Are potential but unverified savings from Medicaid Managed Care worth children dying? I don’t think so.

I ask of you the following:

Please exclude the approximately 1000 children in the Medically Fragile Technology Dependent Waiver from Medicaid managed care.

And please ensure MCOs do not further reduce already low reimbursement rates for critical supplies like ventilators, feeding tube equipment, IV supplies, and other lifesaving devices.

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