State Audit Finds Pediatric Hospice Waiver Program Disorganized

More Than 25% Of Terminally Ill Children Missing Care

A performance audit conducted by the Office of the State Auditor has found that Colorado's Pediatric Hospice Waiver program--designed to waiver some expenses for children with fatal conditions--has not been doing its job adequately. The program is meant to provide palliative care for children under the age of 17 who have a received a physician's diagnosis that they are likely to die before reaching adulthood.

Deputy State Auditor Monica Bowers told HuffPost the audit was conducted at the signed requests of State Republican House Speaker Frank McNulty and former Democratic Representative Dianne Primavera.

The audit found that more than one quarter of children enrolled in the program have received no waiver services over a two-year period, and children who are receiving waivers have only seen a mere 5 percent of their services over that same period between December 2008 and March 2010. The program caps its limit to 200 children, and as of March 31, 2011 there are 143 children who are enrolled.

Bowers told HuffPost this is the first time the program, which began in 2008, has been audited.

Home and Community-Based Services (HCBS) waiver programs allow the patients to continue living with their families in their home environment and to avoid being institutionalized. The waiver program operates through the Center for Medicare and Medicaid Services (CMS), but the difference between the Waiver program and standard Medicaid programs is that children can receive extended care until they're 18. The standard Medicaid hospice program limits care for 6-month terminal prognoses only.

Because of the issues we identified with respect to care planning, we are concerned that the SEP agencies do not fully understand their responsibilities for identifying and documenting the service needs of children in the Waiver program.

...based on the low utilization of the fundamental Palliative//Supportive Care services across the program and the reported practices of three of the five SEP agencies we contacted, we believe SEP agencies are not conducting the care planning process in a way that enables children to access services through the program as intended by state and federal laws.

The point however, is that under the Waiver program the terminally ill children who are enrolled are supposed to be receiving frequent and intermittent care according to their needs. Palliative care is also supposed to be included in the program, but according to the report there is a lack of documentation proving the child or their families ever received that care.

Part of the problem, the report says, is a lack of providers.

The OSA report says:

Nine of 14 children whose care plans we reviewed did not receive any waiver services because there was not an available waiver service provider. In some instances, a provider was not located within the geographic area; in other instances, a provider was located within the area but had a waitlist and could not accommodate the child. The number of providers has grown from 14 to 17, or about 20 percent, since the inception of the Waiver program while enrollment has more than quadrupled over the same period.

Another problem is that the providers sometimes end up deciding the service needs, rather than the case managers who were supposed to be the ones delegating them.

"Which is not how it's supposed to work," Bowers told HuffPost.

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