Publication: THE CHARLESTON GAZETTE
Published: 07/22/2005
Page: 2A
Headline: FAMILY WAITS FOR MEDICAID WAIVER SISSONVILLE MOTHER NEEDS HELP TO CARE FOR SEVERELY DISABLED DAUGHTER AT HOME
Byline: MICHELLE SAXTON THE ASSOCIATED PRESS

Marlene McDougal is in limbo, waiting for an opening in a state Medicaid waiver program that can help her care for her severely disabled daughter at home.

Terra Deel, 23, has cerebral palsy, scoliosis and a seizure disorder and is blind. The Title XIX Home and Community-based waiver program provided therapy for motor skills and language, as well as respite care, until 2001.

That's when McDougal, who was sick with diabetes and pancreatitis, placed her in a nursing home.

McDougal brought Terra home in June 2004 after her own health improved.

"She wasn't getting the attention and care that she needed," McDougal said. "It would break my heart."

She reapplied for Terra to enter the waiver program before taking her out of the nursing home, expecting a smooth transition. But it took until January for Terra to get approved after delays that included a missing psychiatric evaluation that had to be redone.

McDougal received a letter in February notifying her that the program is full and that approved applicants have been placed on a list until slots become available.

But waiting isn't easy.

"It's going to keep her out of a nursing home," McDougal said as she sat on the couch of her Sissonville home recently with Terra, who was laying down and eating crackers, smiling and craning her neck at the sound of her four nieces and nephews playing. "It's going to keep her home with her family."

The Title XIX program waives Medicaid family income guidelines and provides services to more than 3,800 mentally retarded or developmentally disabled adults and children in West Virginia who otherwise would have to live in residential care facilities.

According to a 2000 federal court order known as Benjamin H., approved applicants should get services within 90 days, advocates say.

But that only applies until the slots are filled, and then those affected are notified of the wait, Medicaid officials say.

According to the order, applicants should be notified if their wait is expected to take longer than 90 days. The state must seek clarification as to whether the applicant elects to wait longer than 90 days or not.

"Many individuals are in this very same situation," said Amanda Gum, resource coordinator with West Virginia University's Center for Excellence in Disabilities. "The problem is, what do you do about it? You're really just forced to maintain a wait list.

"If the state doesn't have funds ... you're just left waiting."

The state Department of Health and Human Resources said 474 people were approved for the Title XIX MR/DD waiver program from July 1, 2003, through June 30, 2005, and put on a waiting list.

Of those, 160 had to wait longer than 90 days to get a slot/services. The waiting list now has 159 people.

West Virginia has 3,844 total slots in the waiver program.

The natural attrition rate for people leaving the program due to death, moving out of state or family members opting to remove them averages between 25 and 50 people a year, said Pat Winston, program manager with the Bureau for Medical Services.

But under a federal rule, the state cannot fill any slots that open up until the next fiscal year begins on July 1, which has already passed.

"That has been a question of contention for as long as I have been around," said DHHR spokesman John Law.

That is one example of why the National Governors Association is asking for more flexibility in their Medicaid reform proposals, said Shannon Riley, the bureau's executive assistant to the commissioner.

Because West Virginia must get permission from the federal government to offer waiver services, which go beyond coverage required in Medicaid, "They hold us fairly strictly to the rules of the waiver," Riley said.

Funding from the state's general revenue is also limited, so creating new slots is not a solution.

And the list could continue to grow, as the renewal application for the waiver includes no increases in the number of slots. West Virginia must renew its waiver application with the federal government every five years.

Meanwhile, McDougal is tied to her house and has to miss doctor's appointments because Terra can only travel by ambulance due to her restricted movement.

"I've let myself go to make sure she's taken care of," she said.