In Mississippi, Medicaid drops children with Down syndrome from state assistance

From The Clarion Ledger in Miss.:

Medicaid officials have begun to remove children with Down syndrome from the state rolls, leaving parents to find ways to pay for expensive physical, speech and occupational therapy.

Some parents say their children had been in Medicaid's Disabled Child Living at Home program almost since birth before being removed.

Other parents say their children should have been approved for coverage but were rejected.

Medicaid officials insist their rules haven't changed. The form they use today is the same one they used in 1993.

They defend their work in assessing children, pointing to an overall error rate as less than 1 percent - among the best in the nation.

"We want to ensure that those who are on the program are those who really need the assistance," said Francis Rullan, director of communications for Medicaid in Mississippi. "If there are individuals on the program who shouldn't be, the state could be required to repay the federal government for expenditures made on their behalf."
Mississippi's Disabled Child program, which has no income-eligibility requirement, rose from 939 in January 2007 to 1,251 in December. It was at 1,176 in July.

The decline comes at a time when Medicaid officials are scrambling to save money, facing an estimated $34 million shortfall.

Deborah Edmondson of Jackson and her husband, Stephen, whose daughter was born a year ago with Down syndrome, described their experience with Medicaid as frustrating. "We have provided tons of paperwork," she said. "We went to every single doctor and got paperwork and hand-delivered it to Medicaid."

She was denied coverage.

"My daughter is in therapy three times a week," Edmondson said. "And I live at UMC (University of Mississippi Medical Center)."

Stephen Edmondson said the hearing officer told him she was going to recommend his daughter be approved.

A month later, the couple received a rejection letter. They now are suing.

"The Edmondsons' recollection of statements made at the hearing is inaccurate, and we will prove that," Rullan said. "We look forward to defending our position in court if necessary, but we are also open to more amicable alternatives."

Medicaid officials acknowledge the language in their documents is confusing.





According to federal regulations, a child with Down syndrome must require the same level of care provided in a hospital or nursing home to qualify.

"Who does qualify for that unless the child has a feeding tube?" asked Bill Pittman of Hattiesburg, whose 4-year-old daughter was removed from the rolls. She had been on the rolls since she was 3 months old.

In a June 28 letter, Medicaid official Pam Commander wrote, "There is no evidence this child requires extensive medical care in the home."

Pittman said the interpretation of regulations lead parents to a Catch-22. If therapists and parents work hard and children with Down syndrome improve, "they no longer meet the standard of care required," he said. "If they're not getting better, then Medicaid won't pay because they're showing no sign of improvement."

Mary Troupe, executive director for the Mississippi Coalition for Citizens With Disabilities, which has been working with families, said Medicaid officials need to do a better job of explaining to doctors what is required.

"Here these parents are doing what they've always done, they're reupping, and all of a sudden they get a letter saying your child doesn't qualify," she said. "You haven't told the doctors, and you haven't told the parents."

Many parents give up rather than fight, she said.

Tye Burnham of Brandon said her daughter, Isabella, who turns 7 next month, was kicked off the rolls because she had to be getting "the kind of care like she would get in a nursing home."

"It didn't seem age appropriate to me," Burnham said.

Her daughter since has been reinstated, something she's grateful for because physical and speech therapy bills alone run more than $500 a month. "We really couldn't afford it," she said.

Jackie Wansley of Jackson still hopes to get her 6-year-old daughter back on the rolls.

She said she doesn't blame Medicaid. She never received the reapplication form because she moved.

Medicaid officials have asked her for a psychological exam - something she said they never requested before this year.

She said she's unable to afford that exam, already having to pay her child's doctor $300 to treat strep and an ear infection.

She said her daughter needs additional speech and occupational therapy and is unable to get it in school.

Rosemary Moody of Philadelphia said her son, Andrew, first qualified for the Disabled Child program when he was 3 months old. Now he's 10.

She said she didn't know her son had been removed from the rolls until she went to get him new glasses. He has crossed eyes, and one eye shakes, she said. "I never received a letter saying he was kicked off," she said.

She has talked with Medicaid officials, who have told her a psychologist must examine her son and do an IQ test.

She said she can't afford the bill for the psychologist, much less more doctors, because her son has a history of pneumonia and dental issues.

"I don't know what we're going to do," she said. "We're going to have to leave it in the Lord's hands."