4/21/2004

By Daniel Barrick

Before Joyce Ninness's 4-year-old daughter Emma began therapy with an in-home tutor six months ago, a shopping trip was nearly impossible. Emma, who has autism, screamed hysterically over the slightest variation from routine: a trip to the grocery store, stopping at a traffic light. Now, Ninness said, "Emma's learning how to act in the real world."

The reason, Ninness said, is a special Medicaid program designed for severely disabled children.

In preschool classes at Eastman School, Emma works one-on-one with a therapist before the rest of her classmates arrive. Her vocabulary has doubled in the past few months and she's calmer in the classroom. Ninness credits the 10 hours a week of in-home support with calming Emma's behavior. And she believes that with more therapy and tutoring, Emma could catch up with her classmates.

New Hampshire Health Commissioner John Stephen has proposed tightening eligibility rules for the special insurance program, known as Katie Beckett Medicaid, that provides Medicaid coverage for families that would not normally qualify. In recent days, Stephen has met with a handful of families in the program in an attempt to calm worried parents who fear they'll lose help with their medical costs.

As he prepares to announce the changes to the program, Stephen has told families they won't lose financial help if their children are severely disabled. But many parents say it's hard to stay calm among the talk of restricted access. They say they're worried about any changes to a program that allows them to take a role in their children's health care without sinking into debt.

"It's the one thing that has worked to make a difference in my daughter's life and my family's life," said Ninness. "It scares me that 30 years ago, someone would have said, 'Your child belongs in an institution.' I hope that I won't need this assistance all that far into the future. But without some support, I don't know where she'll end up."

The Katie Beckett program is designed to let disabled children stay at home and receive the same level of care they'd get at an institution. Stephen said he will present some preliminary changes at a public forum in Claremont tomorrow night. At a much publicized meeting this week with a Raymond grandmother who shared his views, Stephen said he wants to rein in the program by tightening eligibility requirements. He promised to save at least $500,000 by doing so.

The program has expanded significantly in New Hampshire in recent years: from 400 children in 1994 to 1,200 children in 2003. Disability advocates say much of that increase has come from medical advances in detecting disabilities, especially autism. Over that same time period, autism diagnoses across the country have increased sharply. And disability experts said financial concerns were not the best standards by which to evaluate the Katie Beckett program.

"The myth is that (families on Katie Beckett) don't pay now for anything," said Gordon Allen, executive director of the New Hampshire Developmental Disabilities Council. "The reality is, they're providing a tremendous amount of care and expense."

Many parents interviewed in recent days agreed, saying financial help through the Katie Beckett program provided their children a rare opportunity to receive the care they need while letting them experience family life.

Annette Kowalczyk, whose son Christopher Beaudet has been on Katie Beckett Medicaid for 10 years, says the program is also a benefit to families who pay the emotional costs of living with a disabled child. Rather than relying on private institutions or staffing agencies for nurses, parents can take an active role in their children's lives, she said.

"It's not a big, huge handout," said Kowalczyk, whose son, a fourth-grader at Loudon Elementary School, suffers from cerebral palsy. "This is a tragedy, but the children are who they are for a reason. We're not looking for handouts; we're just looking for some help from the community."

Mary Beshta of New Hampton says Katie Beckett Medicaid is the only thing that keeps her family financially secure. Her daughter, Jessica, suffered a brain defect at birth. Now 11, Jessica is fed through a tube attached to her stomach and requires a special suction machine to ensure that her lungs don't fill with fluids. She has no motor control and is unable to speak.

Jessica's prescription drug costs alone cost more than $4,000 a month, Beshta said. Beshta works 60 hours a week and her husband works part-time. With a combined income of $42,000 a year, the Beshtas earn too much to qualify for Medicaid, but not nearly enough to cover all of Jessica's needs. Without Katie Beckett, Beshta said, she would have to quit her job to provide the constant care her daughter would need.

"It enables families to work and be proud members of the community," she said.

Allen, at the New Hampshire Developmental Disabilities Counsel, said officials looking to save money would find little to trim in the Katie Beckett program.

"Every time we look at social programs in this state, we have never, to my knowledge, found places where we're just showering people with money," Allen said. "(Katie Beckett) is a good program. It's a compassionate program. And it is expensive, but you have to expect that. These are the most medically challenged kids we have."