‘This is a life-saving need for my child:’ Milwaukee County families seeing delays in respite care

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MILWAUKEE COUNTY — Amy Van Sistine will do whatever it takes to keep her son, Lucas, in her home. He is 7 and has intellectual disabilities.

"He, himself, probably functions, in his mind, about the level of a 9-month-old," Van Sistine explained.

His disabilities qualify him for a respite care worker.

"Without respite care, our home is not functional," Van Sistine said.

Respite care is temporary care provided to those who care for a child or adult that is sick or disabled. Lucas qualifies for up to 40 hours of respite care a month. It gives Van Sistine, who cares for him all day, a break.

"He isn't able to feed himself," said Van Sistine. "So she'll help us with feeding, and that allows us to sit down to dinner."

Funding for Lucas' respite care comes from Medicaid. Milwaukee County administers those waivers.

The Van Sistine's respite care worker was scheduled to start on July 1. However, the family hit some roadblocks.

"We get a call first thing in the morning from our social worker saying, 'No. The background check wasn't done,'" Van Sistine recalled.

Even with the county fast tracking approval, Lucas' care was delayed until July 24. Friends of the family set up a GoFundMe to help.

"We private paid our individual for respite care so that we could have some help," Van Sistine said.

The Milwaukee County Disabilities Services Division acknowledges delays in respite care approval and payments. One reason is a transition is underway from paper time sheets  to a new electronic system that monitors time and pay.

The Director of Health and Human Services, Mary Jo Meyers, sent Contact 6 the following statement:

“Milwaukee County Department of Health & Human Services is dedicated to providing our residents with the quality care, services and programs they need, when they need it and in a responsive manner. We are proud to work directly with Milwaukee County families to ensure they have access to the full continuum of care they need. As we transition to a new electronic system, we remain committed to providing our residents with the right support at the right time.”

Van Sistine said families she knows are struggling as they wait.

"This is a life-saving need for my child," she said.

The transition to the electronic system started in March, and should wrap up by the end of August. It should provide better tracking and accountability for Medicaid. The county said employees are working hard to process paperwork to make sure there are no delays going forward, and that workers are paid as quickly as possible.

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