Revision of Community Waiver Program slammed; Parents, Providers upset with proposed changes

Riverton St. Rep. David Miller listened to testimony from parents and providers at a meeting on the Community Waiver Program Monday night. (Ernie Over photo) 

(Riverton, Wyo.) – A gathering of some 80 parents, providers and those receiving care under a Community Waiver Program Monday night slammed the second draft of revised changes to the program proposed by the state’s Behavioral Health Division (BHD). Most in the audience agreed that the proposed changes needed to be studied and not rushed into.

Those in attendance complained that the Division’s attempt to reduce a waiting list for community services by reducing the present level of services without any budget increase was unworkable and would have catastrophic results.

The Division was directed by the 2013 legislature to draw up separate waiver programs for both support and comprehensive services for persons with developmental and intellectual disabilities to reduce the number of people on the waiting list for those services.

“The state wants to move 23 percent of the 600 individuals on the waiting list into the waiver program with the same amount of funding,” said Shawn Griffin, CEO of Community Entry Services. “It’s hard to add people into services and not provide additional funding without taking current services away from others.”

The waiver program provides funding for home or group home support.

St. Rep. Lloyd Larsen made a point while answering questions. (EO)

St. Rep. Lloyd Larsen, left, made a point at the meeting. (EO)

Four Fremont County state legislators were present to hear concerns over the program, including St. Reps. David Miller of Riverton, Rita Campbell of Missouri Valley and Lloyd Larsen of Lander, plus Sen. Cale Case of Lander. Sen. Eli Bebout of Riverton did not attend. Larsen is a member of the Joint Labor, Health and Social Services Committee, which is reviewing the Department of Health’s plans.

Parents and providers alike complained that the present set-up allows little if any respite time for the primary care givers due to the nature of care required by their children or guardians.

“The state wants family, friends and church members to take care of our children with disabilities,” said Rick Treese. To demonstrate how difficult it is for he and his wife Linda to care for his adult daughter, he showed a large gallon-size ZipLock bag filled with medications that were required to be dispensed four times a day, a nerve stabilizer magnet that must be used on her head when she suffers a seizure and a bed monitor for recognizing seizures at night. “There’s only one person in my family qualified to take care of her. That’s why we’re concerned about (the state’s idea for) “natural support” and a loss of revenue to take care of people,” he said.

Kristi Fegler: "We need to keep them at home and safe."

Kristi Fegler: “We need to keep them at home.”

Sharie Ketelhut of Riverton rose to talk about her experiences in being a provider of service for the last 18 years for a child they accepted into her family from age three to now at age 22. “We have three children of our own who have given up their mother. I can’t leave, take a walk with my kids, go fishing or four wheeling or any other normal activity because of the constant care required for Echo,” she said. I keep hearing the state say do more for less, well, for years and years I have been doing more for less. I have to be there for her and I cannot use natural support. Could you do this without being properly trained,” she asked.

Ketelhut was also very critical of the state’s plans to build a new office building in Cheyenne while taking funds and support away from waiver providers. “These are real kids with families. A building or a life? Don’t do it at the expense of a child. We need respite. You’re just robbing Peter to pay Paul,” she said. “Please don’t take away what limited support I have now.”

Speaker after Speaker, story after story, the message was the same. It was emotional testimony that seemed to get the attention of the four legislators.

“I’m the longest serving Fremont County legislator,” said Sen. Case of Lander. “I helped to build the waiver program beginning in 1993, and I’m also the guardian to someone at the Wyoming Life Resource Center with a very severe disability,” he said. “I also worship his providers the way you worship your providers. I want to work and figure this out.” Case said the parents and guardians of residents at the WLRC “are just as terrified of their system going away as you are, and they are just as supportive of their services. We have to work together, we’re both trying to do the same thing.”

Miller thanked audience members for their input. “We are here to learn,” he said, “This is important.”

Campbell agreed with what Case and Miller said.

Janet Horton caught the ear of Sen. Case afterwards. (EO)

Janet Horton caught the ear of Sen. Case afterwards. (EO)

Larsen said he felt the service done by the parents and providers “is critical to the success of the State of Wyoming. We’re trying to sort throught this on the Labor Committee,” he said.

Larson noted that the state’s first two waiver plans both went back to the drawing board in the face of overwhelming opposition, and he said the third rate plan will be posted on the Health Department’s web site by the end of this month. “But you’ll only have two weeks to respond to it,” he said.

Larsen said he was empathetic to the concerns expressed at the meeting. “I understand this respite business, but we have 600 persons on a waiting list for services that you have now, and how do we do that?” he asked. “We have to work through it.”

Larsen also said that portion of the waiver requiring “natural support” is going away. “This is not The Little House On the Prairie, we can’t do that anymore,” and he said the rest of the committee agreed with that.

The Lander lawmaker also agreed with many in the audience that the waiver revision needs a time out to place a hold on the changes until all the ramifications can be studied. “We’re on speed here, we need to take a valium and chill out a bit,” he said. “We need a realistic solution, how to implement the waiver without redoing it over and over again. We need something sustainable,” he said.

Community Entry Services hosted the meeting, which featured nearly two hours of emotion packed testimony and questions directed at the lawmakers.

To learn more about the Community Waiver Program, click here.

Becky Lancaster, standing at right, "a lot of people care for Amber, but that doesn't mean than can care for her." (Ernie Over photo)

Becky Lancaster, standing at right, “a lot of people care for Amber, but that doesn’t mean that they can care for her.” (Ernie Over photo)