By MIKE SHIELDS
KHI News Service

WASHINGTON — Officials at the National Council on Disability have sent a follow-up letter to federal and state officials urging them to hold off on including long-term supports for the developmentally disabled in KanCare.

The letter lists several steps the advisory group said Kansas should take before securing federal approval for its controversial initiative.

The missive was delivered today to top officials at the Centers for Medicare and Medicaid Services and top officials at the lead Kansas Medicaid agencies.

In essence, the letter calls for Kansas officials to go back to the drawing board and develop a plan that includes more input from those who would be affected by the proposed changes.

The letter also recommends the state operate a regional pilot program over the next 12 months before being allowed to launch its plan statewide.

The list of recommendations also repeated a concern raised earlier by the council that Kansas should not be allowed to include long-term DD supports in KanCare while excluding from KanCare the residents of the so-called intermediate care facilities operated by the state — Kansas Neurological Institute in Topeka and Parsons State Hospital and Training Center.

It also called for Kansas to create a “robust and independent” KanCare ombudsman’s office with more resources than the state currently allows for it. The ombudsman’s office is housed at the Kansas Department for Aging and Disability Services. The council and other critics of the current structure say the ombudsman shouldn’t be directly employed by an agency that delivers or administers Medicaid services.

The council also called on CMS to require that the managed care companies hired by the state to run KanCare have at least one care coordinator per 40 Medicaid cases that involve developmentally disabled enrollees.

The letter was signed by Jeff Rosen, the council’s chairperson, on behalf of the full board.

Ari Ne’eman, a council member from Silver Spring, Md., said the letter offered specific recommendations for Kansas but was intended to also communicate the council’s thoughts on how Medicaid managed care might be implemented in other states.

The council’s position is that managed care can offer benefits to Medicaid enrollees, if implemented in the right way.

“We look at Kansas as a bellwether on this issue for the rest of the country,” Ne’eman said, “so while we focused in some sense on Kansas, we also articulated it with our broader vision for long-term supports and services in mind.”

Ne’eman said the letter was issued now because the council was aware of ongoing discussions between CMS and Kansas officials and the council was hopeful its recommendations would be a helpful resource in the discussions, serving as a possible blueprint or rule of thumb for the way to handle long-term services for the disabled in a Medicaid managed care framework.

Former Kansas State Rep. Gary Blumenthal, now a Massachusetts resident, is one of the council members. The council is a federal agency that advises the executive branch and Congress on issues dealing with the disabled.

The council sent a letter in December to CMS and state officials urging delay of the Kansas plan. That came just after the council held two days of hearings in Topeka at the Kansas Statehouse.

Officials in the administration of Gov. Sam Brownback responded critically to both letters.

“The latest letter contains comments very similar to NCD’s earlier letter. Our response…is the same as it was in December: that the NCD session on the I/DD waiver in Topeka was not an honest, objective process and did not result in objective recommendations,” said Angela de Rocha, spokesperson for the Kansas Department for Aging and Disability Services.

“We have been having some very constructive conversations with CMS and our stakeholders over the past two weeks, and in fact CMS has received a number of letters from other national advocacy groups in opposition to NCD’s demands on the State of Kansas,” de Rocha said.

The Brownback administration initially planned to roll long-term DD services into KanCare starting Jan. 1. But CMS withheld approval citing various concerns with the state’s plan.

Administration officials say they working through those as part of ongoing discussions with the federal authorities and expect to have full sign-off from CMS in time to launch their planned expansion by Feb. 1.