Father of disabled child: 'Every month, I have to argue something'

Since the day she was born, 19 months ago, Anabelle Linzey of Ridley Township has been on a category of state Medical Assistance that covers severely disabled children. Profound brain malformations limit her functions to those of a newborn, and she requires round-the-clock care.

During one of his daughter's frequent hospital visits, Brian Linzey was told that Anabelle no longer had health insurance. Terrified - "One day without coverage would be like life or death," he said - he repeatedly called the state welfare office in Delaware County, but no one answered. He said that when his wife went in person, staffers argued with her, insisting that routine paperwork had never been sent in.

It was only after the advocacy group Public Citizens for Children and Youth took up the case, presenting a dated fax transmission from Linzey's computer, that a supervisor stepped forward, Linzey said, and conceded that the paperwork had been sitting on a caseworker's desk all along. Coverage was retroactively reinstated after a couple of days in August.

New numbers from the Pennsylvania Department of Public Welfare show that 88,000 fewer children were receiving Medical Assistance coverage in December than in August. Not counted in that number are at least 23,000 children, who - like Anabelle - had their cases closed and later reopened, often with the help of legal and advocacy organizations.

Most of the cases were closed after state officials ordered DPW workers to process a backlog of eligibility reviews. A number of cases reinstated with advocates' assistance involve children whose disorders require such frequent medical care that a gap in benefits is quickly discovered.

The most severely disabled are covered under a category, known as the PH-95 loophole, that does not have family income limits in Pennsylvania - and whose beneficiaries typically don't lose eligibility in routine reviews.

Parents in many of those cases, like Anabelle's, are also more likely than the generally poor Medicaid population to know their rights, own computers, and aggressively seek legal help without fear of reprisal.

Although Anabelle's benefits were restored, her father said Medicaid had been increasingly challenging routine orders - shorting the monthly catheter supply, for example - and denying a request for more finger sensors to measure blood-oxygen levels.

"For the past three or four months," Linzey said, "every month, I have to argue something."