Oct. 02--On the three days a week she works, Jamee Weber gets a ride to and from the Cedar Rapids law office where she files, types and answers phones.
The woman who drives her also helps her get dressed, does household chores and cooks for her. Weber would likely forget a pot on the stove.
"Some things I can remember, and some things I can't," Weber, 33, explained one afternoon in the Marion home she shares with her mother.
Weber has required a personal caretaker, paid partly with public funds, since a September 2005 motorcycle accident left her with a brain injury. She and thousands of other Iowans and their families are closely following the state's effort to reorganize how it administers and delivers the services they need to live day-to-day life.
"There's people (who) don't have Title 19 that need to," said Weber, referencing the Medicaid program that pays for many of the services that enable her to live at home instead of in an institution. "They need to be improving things, instead of taking them away."
Legislation passed last winter mandates sweeping changes in Iowa's mental health and developmentally disabled (MHDD) services. Committees of human service providers, clients, agency officials and lawmakers are working to design a new system by the time the Legislature reconvenes in January.
Senate File 525 spells out four major goals:
-- Shift funding for services for adults with disabilities not covered by Medicaid from the counties to the state.
-- Reorganize non-Medicaid services from the counties to regional networks, while maintaining local access.
-- Replace the archaic legal settlement process for assigning costs.
-- Meet the needs of service consumers in a responsive and cost-effective manner.
"That legislation drew a line in the sand and said we're not going to continue the services the way they are," said Dr. Chris Atchison, associate dean of public health practice and a clinical professor at the University of Iowa. He's also co-chairman of one of six working groups developing a reform plan.
"They've taken action to actually terminate the underpinnings of the system as we've known it" and replace it with a new system, he said.
What's at risk
MHDD clients and their families -- especially those in Linn, Johnson and a handful of other more populous counties with services unavailable in rural areas -- are worried the new system will mean fewer of the services they depend on.
"There's every good chance that some of these dollars are not going to be there," said Linn County Supervisor Linda Langston, also a working group member.
Langston said Linn is the only county in Iowa to operate its own sheltered workshop, Options of Linn County. The county also provides payments for rent, medications and transportation that aren't covered by many other counties.
Those advantages -- along with economic opportunities -- draw people from rural areas, complicating an already tangled funding stream that draws on state, federal and local tax revenues.
"We're where the jobs are," said Mechelle Dhondt, Linn County MHDD director. "Some of it's because they come for services, but most of it's because they come for work. Then they start having problems."
Under "legal settlement," when someone moves to a new county, their former county must fund all the services they receive at their new residence.
"Counties don't always like it, because they don't fund those services in their home counties, but they have to fund them," Dhondt wrote in an email.
What might be gained
Managing legal settlement issues is an expensive process.
"We have people whose jobs are, that's all they do," said Dhondt. "It's cumbersome, creates more administrative costs and is difficult for providers."
The state and Iowa counties spent more than $300 million last year on MHDD services. In Linn County, MHDD services for 3,922 clients cost $32.5 million in the year ending June 30 and is expected to reach $37 million during the current fiscal year.
The state covered $15.36 million of last year's Linn County services. County property taxes accounted for $8.1 million, Medicaid paid $8.1 million, and the balance of $880,000 came from fees charged to clients and their insurance.
Johnson County spent $11.3 million on MHDD services during the same period, with county property taxes covering just over $2.9 million. Numbers aren't available for that year, but the county had 1,948 MHDD clients the previous fiscal year.
The six working groups include committees focused on services for adults and children, the judicial branch and the roles of counties and the state. They'll deliver recommendations to an interim legislative committee by the end of October.
"They're not just recommendations," said state Rep. Renee Schulte, R-Cedar Rapids, an interim committee member and House sponsor of the reform mandate. "They're going to come out with actual pieces of legislation for the interim committee," which will fine-tune the committees' proposals and bring them to the Legislature.
SF525 also calls for the creation of regional service-delivery groups consisting of at least three neighboring counties with combined populations of 200,000 to 700,000. The hope is consolidation will bring more efficient management and administration.
"If you have a very small county, you cannot provide all these services," said Schulte. "By requiring a group to have a critical mass of people, then it becomes more cost-effective. We want to have local delivery, but what we're working on is the administration."
MHDD clients and their families worry services offered in high-population counties will be dropped in favor of a standard, statewide package.
"What we're hoping is that, if they're listening to us, they'll see they can do more by giving us some of our services," said Bob Cihla, director of Peer Action Disability Support of Linn County. "There are people out there who a little cut of services is going to send them into a nursing home," which would cost more than supported at-home living.
"It should be more fair, more even, across the board," said Kris Graves, 32, of Iowa City. She receives weekly therapy for depression and works as a peer-support specialist at the Community Mental Health Center in Iowa City.
"It's a very important service," she said. "I think if I had it when I was younger, I wouldn't have been in the hospital so much."
Atchison said the challenge is to assure families that comprehensive services will be delivered across the state.
"There's going to have to be some kinds of efforts to stimulate, incent the development of that kind of access," said Atchison.
Linn County officials have already met with counterparts in Johnson County, and other neighboring counties have been invited to explore a regional agency. Langston said Linn and Johnson, which offer most of the same services, are natural partners.
Control of funding
A key to maintaining services will be the local authority to to fund them. In 1996, the Legislature froze counties' tax levies for MHDD services. Lawmakers promised the state would pay for new clients and cost increases but haven't kept that promise.
"There are a whole number of things we're required to do, and if we don't have the flexibility in the funding, I don't see how we're going to do it," Langston said.
Observers and participants from all sides say they're optimistic as the working groups wrap up their work this month.
"It's not going to be quick," said Schulte, who expects the reform process to take five years. "We will have legislation in the next legislative session to start down the path."
Iowans like Weber will be watching.
"I want, basically, all the other counties to have the accessibility I had," she said. "We're all disabled, you know?"
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