Aug 21, 2013 - By Randy Tucker, Staff WriterAn audience of 100 parents, caregivers and caseworkers expressed their concerns Monday evening over changes in the waiver system that provides respite care and other services to families with physically and mentally challenged children.
State Sen. Cale Case of Lander and State Reps. David Miller, Lloyd Larson and Rita Campbell took input from the audience at Community Entry Services in Riverton in advance of next week's meeting between the Wyoming Health Department and legislators to formalize the final implementation of the changes mandated by Senate File 0060 during the 2013 legislative session.
The official summary of Senate File 60 provides the goal of the bill.
"This act directs the Department of Health to proceed with a reform and redesign of the Medicaid program as studied pursuant to 2012 legislation."
Community Entry Services (CES) CEO Shawn Griffin moderated the meeting.
"It is an important issue, and the turnout indicates that," he said to the standing room only crowd in attendance.
CES is the largest provider of services in Fremont County, but about 20 other caregivers and providers were in attendance.
"We, as a large provider, are concerned with the direction this is taking," Griffin said.
That statement was echoed over the next two hours of audience commentary by a variety of caregivers, parents and case workers working with a wide range of clients, from infants to adults.
The primary issue in the Senate File 60 was to investigate ways of saving the state money in providing services.
"The money is not unlimited," Rep. Miller noted.
Linda Treese, a parent and caregiver, opened the public comment.
"It's not clear what's going to be done," Treese said. "No one knows what's going to come. Our biggest fear is that we will never get to retire. We need to plan for the future."
Treese's husband, Rick Treese, conducted a brief presentation that brought loud applause from the audience. He approached the legislators' table and said, "Part of the re-design is they want 'natural support' -- friends, family and church members are asked to help take care of our children with disabilities."
Treese brought a magnet and a bag full of approximately 20 medications to the table.
"If I want to have someone watch (daughter) Brittany for a few days, I have to show them how to use the magnet to stop her seizures," Treese said. "Then they need to understand how to use all these medications."
The task is challenging.
"I take care of Brittany," caregiver Desiree Cornejo said. "When she has a seizure it is terrifying."
"That's why we're concerned about natural support," Treese said.
Shari Frymire has provided services for her client, Echo, for 18 years.
"She has rights. She laughs, she cries, and her quality of life is good," Frymire said. "If you take her home she will die. She only has a 79-year-old grandmother. Without respite, it all breaks down. We're continually asked to do more for less."
Beck Lancaster was next to speak.
"Amber moved out of the state school with the lawsuit," Becky Lancaster said, referring to changes at the former Wyoming State Training School in Lander, now the Wyoming Life Resource Center. "She has been in our home for 22 years.
"Most of our family members don't have natural support. The school districts and educational institutions aren't responsible for home and respite care. It is more cost-effective to serve a person in a home versus serving them in an institution."
Sandy Von Krosigk of rural Shoshoni noted problems among institutions that have affected a young man under her care.
"We had problems getting two institutions together just to enroll Kyle in school," she said. "We've been on the waiver waiting list for seven years. Safety issues are a concern, we have to watch Kyle 24 hours a day. He only sleeps an hour and a half some nights. We have no natural support, and his own mother can't take care of him."
Kelly Norwood expressed the value that routine has in the lives of some clients.
"A change in routine produces an effect. Juniper goes home Friday night and gets picked up on Sunday after spending weekend with her parents. She went on vacation recently and had to start at the beginning."
Changes under the new law "will affect the kids with the most restrictions," said Kesha Martel, a Lander area caregiver.
"The majority of people in our group have children with very high needs. If something isn't done by December, I'll have to quit the waiver for my family and get another job. In 10 years we've had one raise and two cuts, and now we're facing a possible 50 percent cut."
Deb Williams warned the legislators about the growing number of autistic children entering school.
"There has been an 800 percent increase in autism since 1990, and now one in 54 boys is diagnosed with it. Oil companies pass on the expenses to consumers. We have a right to ask for oil revenue to be used for these children."
"No one in this room asked to be this way," said Kristi Fegler, whose son Ty is autistic. "They've been the greatest blessing in our life, (but) I need my case manager and my providers."
Other parents spoke up.
"It's a slow process of transitioning," Reggie Dockham said. "My son John also is autistic. We don't have any natural support. I'm glad we have CES here."
"Most of us exhaust all the natural help we can get before we ever come for a waiver," Mike Bailey said. "Without them you don't have the ability to have a regular life. They do it because they love these kids."
Tanya Knell of Lander talked about a ripple effect.
"With the cuts we'll be taking, there will be a load on other agencies," Knell said. "Some children will move to foster care with payment by DFS, but foster care won't take some children. DFS only pays $1,000 a month and currently the waiver pays $131 for a 24 hour day. There will be repercussions in other areas. Providers are not going to be able to keep their jobs. I'm looking at a 63 percent pay cut."
Owen St. Clair of Mill Creek said funding is going in the wrong direction.
"It was a shock when he had Down's syndrome and it was more a shock when he had a stroke when he was four years old," St. Clair said of his son. "The amount of work these providers do for these kids is amazing. If anything they should be paid more, not less. I hope you deeply and sincerely listen to these people tonight."
Julie Yager of Riverton put a positive end to the meeting.
"I think we need to look at their abilities rather than their disabilities," she said. "We look at success in a different way. Without this support these small successes will not be part of our children's lives."
Sen. Case spoke as the meeting closed.
"I helped built this waiver program," he said. "I've been involved since 1993. I have a family member at the Life Resource Center. There is no natural support for Matthew. The Life Resource Center is as terrified of the changes as you are. We have to reach out and work together."
"Thanks to those who spoke and those who didn't," Representative Miller said."The state has a lot of money, and this takes a lot of money."
Rep. Larsen said he recognized the likely impact of the legislation.
"The service you provide is critical to Wyoming. There are 600 people on the waiting list to receive services. How do we do that?" Senator Larson asked. "Rest at ease, the natural support thing just isn't there. To depend on natural support just is not going to work."
Linda Treese asked the legislators to delay the transition and put more time into studying its effect.
"We're moving way too fast with this redesign," Treese said. "We're expected to do something we don't even know about."
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