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DD advocates praise governor’s call to trim waiting lists for services

A screenshot from "What Are You Waiting For?" a video produced to present to Kansas legislators by the advocacy group End The Wait, which is funded by the Kansas Council on Developmental Disabilities.

A screenshot from "What Are You Waiting For?" a video produced to present to Kansas legislators by the advocacy group End The Wait, which is funded by the Kansas Council on Developmental Disabilities. by Phil Cauthon

Advocates for the developmentally disabled held a Statehouse press conference today to praise Gov. Sam Brownback's plan to reduce by 600 the number of disabled Kansans awaiting home- and community-based Medicaid services.

"We think this is a great move by the governor," said Tim Wood, campaign manager for End the Wait, a group pushing for elimination of the waiting lists. "This is a good step in the right direction."

Wood and fellow advocates also urged the Legislature to consider developing a plan to fully eliminate the waiting lists, which have grown over the past decade to include more than 5,000 people with physical or developmental disabilities. About another 1,200 people with developmental disabilities are receiving some of the services but waiting for more.

The governor last week released a budget amendment asking the Legislature to spend an additional $18.5 million to reduce the waiting lists. The recommendation came after state budget forecasters concluded that state spending on Medicaid services would be about $98 million less than previously expected for the fiscal year that ends June 30, including about $37.6 million from the State General Fund.

The governor characterized the reduced costs as "dividends" from the enactment of KanCare, the initiative he launched Jan. 1 that expanded managed care in the state Medicaid system. State budget analysts attributed much of the foregone spending to fewer people receiving Medicaid services. When federal officials approved the administration's KanCare plan, one of the "special terms" of the agreement was that if money were saved, some of it would be used to reduce the waiting lists.

Wood said he and other advocates also would urge lawmakers to aim for equal reductions in the lists for the physically disabled and the developmentally disabled. The governor proposed that the money be split evenly between the two waiting lists but because the cost of caring for the developmentally disabled is higher on average, fewer people could be served.

Wood said ideally that 300 people would come off each the two lists rather than 400 off the physically disabled list and 200 off the developmental disability list.

"While we appreciate the need to bring all people off the waiting lists," he said, "we want the Legislatuare to consider a fair and equitable way to divvy up the dividends."

In related news, spokesmen for Interhab, a group that represents most of the state's Community Developmental Disability Organizations, said more than 1,000 people had signed up to attend a rally scheduled for Wednesday at the Statehouse to urge legislators to exclude long-term DD supports from inclusion in KanCare.

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The following video was produced to present to Kansas legislators by the advocacy group End The Wait, which is funded by the Kansas Council on Developmental Disabilities.

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DD advocates intensifying effort for KanCare “carve out”

Tom Laing, executive director of Interhab, speaking to parents of developmentally disabled children and advocates at a recent town-hall meeting in Overland Park.

Tom Laing, executive director of Interhab, speaking to parents of developmentally disabled children and advocates at a recent town-hall meeting in Overland Park. by Phil Cauthon

Push is again coming to shove in the struggle over whether the long-term care and support services received by Kansans with developmental disabilities will become part of KanCare or remain outside the control of the private companies hired by the state to manage the Medicaid program.

Advocates pushing for a permanent “carve out” of developmental disability services have circled May 8 on their calendars. That’s the day that the Kansas Legislature is scheduled to return to Topeka to wrap up its 2013 session.

“When you show up in numbers, it makes a difference in the legislative process,” said advocate Tom Laing, speaking last week to approximately 175 parents and advocates at a meeting sponsored by Johnson County Developmental Services.

“A lot of times when politicians do the wrong thing it’s because they haven’t heard from the folks who are the most impacted. If they don’t hear from you, we can’t succeed,” said Laing, executive director of Interhab, an association that represents most of the state's Community Developmental Disability Organizations.

Laing and other advocates said they are hoping that thousands of Kansans with developmental disabilities would turn out with their parents and guardians for a rally on the south steps of the Statehouse and to meet individually with legislators to make their case.

“I’m not a guy who believes in pitch forks and torches. We need to be persuasive, not abrasive,” Laing said.

'Carve in' date approaching

Medical services for the developmentally disabled already are part of KanCare, the reform initiative launched on Jan. 1 by Gov. Sam Brownback. It moved virtually all of the state’s 380,000 Medicaid beneficiaries into managed care plans run by three insurance companies: Amerigroup, United Healthcare and Sunflower State Health Plan, a subsidiary of Centene.

But yielding to pressure from advocates and service providers, the governor and legislators agreed last year to delay the inclusion of long-term, DD support services for a year — until Jan. 1, 2014. With the “carve in” date approaching, advocates are pressing their case again.

“We have to keep these services out of the hands of the profiteers,” said Bridget Murphy, director of the Downs Syndrome Guild of Greater Kansas City.

'Misinformation' fueling concerns

Murphy’s concern that the for-profit managed care companies will disrupt services now generally provided by a network of community-based, non-profit organizations is shared by many parents and advocates.

That frustrates Shawn Sullivan, the secretary of the Kansas Department of Aging and Disability Services, who has spent more than a year meeting with stakeholders to convince them they have nothing to fear from the new managed-care system.

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KanCare pilot project launched but opposition to DD “carve-in” persists

During the 2012 session, a bipartisan group of representatives and senators introduced a resolution attempting to delay the Jan. 1, 2013 launch of KanCare. The resolution failed, but lawmakers succeeded in persuading the Brownback administration to hold off a year on including in the program long-term services for the developmentally disabled. DD advocates say they will ask this year's Legislature to extend or make permanent that temporary "carve-out." Given the large numbers of new legislators following the 2012 elections and the administration's push to expand KanCare, it remains to be seen what will happen. Of the eight legislators shown in this file photo, only three are still serving.

During the 2012 session, a bipartisan group of representatives and senators introduced a resolution attempting to delay the Jan. 1, 2013 launch of KanCare. The resolution failed, but lawmakers succeeded in persuading the Brownback administration to hold off a year on including in the program long-term services for the developmentally disabled. DD advocates say they will ask this year's Legislature to extend or make permanent that temporary "carve-out." Given the large numbers of new legislators following the 2012 elections and the administration's push to expand KanCare, it remains to be seen what will happen. Of the eight legislators shown in this file photo, only three are still serving. by Phil Cauthon

After months of advisory committee haggling over what it should look like, state officials say they are ready to launch the pilot program that will pave the way for including long-term services for the developmentally disabled in the new KanCare program.

Now, all they need to start the pilot are participants.

A recruiting letter went out Friday, seeking organizations and individuals willing to volunteer, but representatives from the state’s developmental disability organizations said doubts remain strong among their members about the pilot in particular and KanCare in general. It seems that nobody, including administration officials, expects a throng of eager participants.

“The advisory committee talked about really wanting, hoping to have a broad representation of providers (in the pilot), including different types of providers,” said Shawn Sullivan, secretary of the Kansas Department for Aging and Disability Services. “I don't know that it’s necessarily as important to have numbers as it is to have different types. I’m hoping to have five providers, at least.”

The administration of Gov. Sam Brownback originally sought to have long-term services for the developmentally disabled included in KanCare when the managed-care program was launched Jan. 1. But groups, including parents, that represent the developmentally disabled, persuaded legislators to postpone that for a year.

KanCare is the governor’s ongoing remake of the state Medicaid program. Since it was launched a few weeks ago, virtually all the state’s 380,000 Medicaid enrollees have been assigned to health plans run by three commercial insurance companies.

The same legislative proviso that delayed the administration’s push to roll long-term developmental disability services into KanCare also called for the pilot program. But disagreement between the administration and advocates for the disabled over what the pilot should try to gauge or accomplish went on for months after the 2012 Legislature adjourned and still hasn’t been fully resolved.

What kind of pilot?

Advocates for the developmentally disabled said they wanted a pilot that would test the administration’s still-unproven theory that the KanCare insurance companies could effectively manage long-term or “non-medical” developmental disability services, producing healthier customers while cutting government costs yet presumably earning profits.

That ambitious set of pledges is something that hasn’t been solidly demonstrated anywhere in the country and sounds “too good to be true,” as Maury Thompson, former director of Johnson County Developmental Supports.

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KanCare workforce shift hampering local agencies

Monica Anderson, right, a case manager with the Johnson County Area Agency on Aging, goes over some paperwork with client Patti Rogers. The two have worked together for seven years, and Rogers said she’s sorry she has to change case managers because of the overhaul of the Kansas Medicaid program.

Monica Anderson, right, a case manager with the Johnson County Area Agency on Aging, goes over some paperwork with client Patti Rogers. The two have worked together for seven years, and Rogers said she’s sorry she has to change case managers because of the overhaul of the Kansas Medicaid program. by Phil Cauthon

OLATHE — Workforce shortages prompted by the overhaul of the Kansas Medicaid program are hampering operations at some social service agencies in Johnson County and elsewhere in the state, according to executives at the organizations.

Human Services Director Debbie Collins said since September, her Johnson County agency had lost three of its nine case managers that assist frail elderly Medicaid clients through the Area Agency on Aging.

Collins said the workers all left for similar positions at UnitedHealthcare, one of the three insurance companies hired by the state as part of the new Medicaid program, which the state has dubbed KanCare. Virtually all the state’s 380,000 Medicaid recipients are scheduled transfer into the KanCare managed care plans effective Jan. 1.

The other two KanCare contractors are Amerigroup and Sunflower State Health Plan, a subsidiary of Centene. All three companies have been busy hiring workers for the past few months.

Collins and other agency administrators interviewed for this article said the bright side of losing the workers was knowing that the KanCare companies had hired qualified staff.

They said they didn’t blame their workers for taking the jobs because the employees told them they would get substantially higher pay at the managed care companies.

But the agency leaders said they weren’t sure how KanCare could save the state money, if the contractors will have significantly higher personnel costs.

“We are all befuddled about that,” Collins said.

Projected savings

Savings will come through a focus on patient education, preventive care, and by “ensuring members have access to the right care, at the right place and at the right time,” said Monica Stoneking, a spokeswoman for Sunflower State Health Plan.

Sunflower, she said, was paying “competitive wages in accordance with industry standards.”

Amerigroup spokesperson Maureen McDonnell declined to comment.

Alice Ferreira, a spokesperson for United Healthcare said the company was giving its new hires flexibility so that their former employers wouldn’t be left in the lurch.

“UnitedHealthcare has been working collaboratively with the agencies to provide case managers the work flexibility to ensure they are able to continue to work with the members as appropriate,” she said in an email. “We are committed to ensure members receive the care they need, and anticipate that this partnership will result in a smooth transition.”

She the company also was dedicated to “creating new jobs in Kansas.”

Officials at each of the KanCare contractors have said they would hire as many as 300 people as they prepare for the new program. Each company also has a Kansas headquarters office.

Changing roles

Officials in the administration of Gov. Sam Brownback estimate KanCare will save the state and federal governments $1 billion over the next five years.

Among the various social service and state agencies that have lost workers to the KanCare companies are the state’s Area Agencies on Aging, which, in any event, are seeing their roles change under KanCare.

Though the agencies are handing off case management for the frail elderly to the KanCare companies, they are expected to take on expanded roles in serving individuals with physical disabilities and traumatic brain injuries by assessing their needs for assistance and helping them choose the right KanCare plan, in the event the persons are not content with their state-assigned plans.

Collins said the changes have left her uncertain about what her staffing needs will be after the first of the year.

“We may very well have to expand,” she said. “We really don’t know what the workload will be.”

Lost connections

Other organizations experiencing KanCare-related personnel pinches include the Johnson County Mental Health Center and the Southeast Kansas Area Agency on Aging in Chanute.

Johnson County Mental Health has had 15 staff members take positions with the KanCare companies, according to agency officials, including a senior administrator and a number of clinicians and case managers.

In response, the center has pressed supervisors and everyone else with proper certification and training into service to coordinate care for clients, said Executive Director Maureen Womack.

The main problem, she said, was that clients had lost their connections to workers with whom they felt comfortable dealing.

“What is falling through the cracks,” she said, “is the therapeutic relationship.”

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Changes under way for determining in-home Medicaid services

Mary Barker, a case manager with the Jayhawk Area Agency on Aging, reassesses the needs of Vivian Glessner, a 91-year-old resident at Briarcliff Care Center in Topeka. Barker meets with Glessner every 11 months to make sure she’s receiving the appropriate level of Medicaid-funded services. An association representing the state’s area agencies on aging has bid on a contract that would have case managers for the frail elderly also assess the needs of people who are physically disabled or have traumatic brain injuries.

Mary Barker, a case manager with the Jayhawk Area Agency on Aging, reassesses the needs of Vivian Glessner, a 91-year-old resident at Briarcliff Care Center in Topeka. Barker meets with Glessner every 11 months to make sure she’s receiving the appropriate level of Medicaid-funded services. An association representing the state’s area agencies on aging has bid on a contract that would have case managers for the frail elderly also assess the needs of people who are physically disabled or have traumatic brain injuries. by Phil Cauthon

State officials are changing the way they determine which in-home Medicaid services are provided to the frail elderly and people who are physically disabled.

The new system will rely on a single agency or organization with a presence in each of the state’s 105 counties to assess what services a person will receive. Currently, there are more than 30 organizations involved with the process. Some assess only the elderly. Others focus solely on the physically disabled.

State officials said their aim is to create a “one-stop shop,” so that services will be determined in the same place regardless of a person’s condition.

'Mishmash'

“The system we have now is a real mishmash,” said Shawn Sullivan, secretary of the Kansas Department for Aging and Disability Services. “We’ll be going to one that takes more of a no-wrong-door, single-entry approach and implements a conflict-free provision of services.”

About 12,000 Kansans currently rely on the services provided by the system, at an annual cost to taxpayers of about $200 million.

A solicitation to potential contractors interested in managing the new system was put out in February. Bids were due April 3.

Sullivan said he hoped to have the contract awarded sometime next month so that a single, statewide Aging and Disability Resource Center (ADRC) will be up and running by Jan. 1, which also is the scheduled start of KanCare, Gov. Sam Brownback’s plan for letting managed care companies administer the state’s $2.9 billion Medicaid program. KanCare remains contingent upon federal approvals.

The resource center, according to Sullivan, would be in charge of measuring the needs of an elderly, physically disabled or brain-injured person. It also would do preliminary screening for Medicaid eligibility and help the person choose the managed care company best suited to meet the person’s needs.

Today, the assessments are handled by 11 area agencies on aging, 10 centers for independent living and about a dozen home health agencies that specialize in caring for the brain-injured.

“When you have this many systems in place, it can be confusing as to who to turn to for assistance,” Sullivan said. “With the ADRC, we’ll be going to one database, one information source and one hotline for people to call.”

Federal initiative

The change, he said, was driven by a federal initiative aimed at increasing efforts to help Medicaid beneficiaries live in community settings rather than nursing homes and a concern among state officials that not enough was being done to prevent the centers for independent living from inflating their assessments in ways that generated more work — and therefore more revenue —- for their case management and home-health programs.

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