From The Rochester Democrat Chronicle. In the picture, Chris Berdan of Pittsford, N.Y., right, says her son Frederick benefits from sessions with physical therapist Pia Stampe. But she worries that state budget cuts will impede Frederick’s progress.
Pat Graff learned about early intervention services 18 years ago when her firstborn child was diagnosed with Down syndrome.
“You think, ‘My kid will go to Harvard and find a cure for cancer,’” Graff said. “When you bring your child home from the hospital and it’s not like the baby you dreamed of, it has a disability, you need hope, you need a focus.”
The physical therapy and other services helped Graff and her husband, William, as much as they aided their son Cooper. “It gives you hope,” she said. “I couldn’t cure it, but it’s very empowering to know there was something I could do to get control over Down syndrome.”
Graff, 52, the director of Integrated Services to Children at CP Rochester, which offers early intervention, said she’s concerned that other families may lose the opportunities her family had because of the state’s fiscal problems.
Gov. David Paterson’s proposed budget affects virtually every part of state operations in an effort to close a $9 billion gap. Among the effects for early intervention are a sliding scale for parental contribution, maximizing payment by commercial insurance, changes in billing to Medicaid and standardized assessments for a child’s eligibility.
But the change that is causing the biggest concern is a 10 percent decrease in rates paid to providers for home-based services.
While rates would increase for services provided in facilities, most early intervention in Monroe County takes place in the child’s home, day care, or a grandparent’s house — what’s called the child’s natural environment.
The lower reimbursement for services comes after all providers have had only one increase — of 3 percent — since 1995. The cut, on top of years of flat rates, has some providers concerned about whether they can maintain their level of service. The rate schedule does not need to be voted on by the Legislature. If approved by the Department of Budget, it is expected to take effect April 1.
Pia Stampe, who has worked as a physical therapist for 15 years and owned Pediatric Physical Therapy Services for the past 12, said that the rate decrease was devastating. Eighty percent of her business is early intervention, and those sessions are conducted outside her Henrietta office. “My big, big, big concern is whether we’ll be able to retain experienced staff.”
Heart of the issue
The issue isn’t only economic, it’s emotional. Early intervention addresses the language, social and emotional, cognitive, motor and adaptive self-help needs of children from birth to age 3 who have a significant level of delay, or who have a diagnosis such as Down syndrome or cerebral palsy.
In Monroe County, early intervention serves approximately 1,400 children and has a gross cost of $16 million, which translates to nearly $6 million after reimbursement from the state and insurance. The county pays 51 percent and the state pays 49 percent, after Medicaid or private insurance has paid their share.
For the first time, the budget calls for families to contribute, and the amount is based on income. It also calls for maximizing private insurance on legitimate claims. New York public health and insurance laws require that commercial insurers cover early intervention for their policy holders. According to the state budget department, 2 percent of total gross program costs are paid for by insurance, although 44 percent of children enrolled in the program are covered by private insurance.
A letter was sent last week from the state Early Intervention Coordinating Council to Paterson, Assembly leader Sheldon Silver and Senate leader Malcolm Smith to urge passage of legislation to “ensure that costs for this critical program are appropriately borne by private insurers.”
Deborah Fasser, spokeswoman for the New York State Conference of BlueCross BlueShield Plans, said that insurers would want to make sure all care was medically necessary and that the program was subject to networks and primary care referrals, as are other commercial health policies. The issue, she said, is providing the necessary services and keeping costs under control.
Mike Dedee, division manager for Child & Family Health Services for the Monroe County Department of Public Health, said that the high costs of the programs require that some changes be made. Dedee also serves on the Reimbursement Advisory Panel for the state’s Early Intervention Coordinating Council. He said he understands the anxiety and confusion of the providers and parents.
“As a community, we will do our best to assess those changes and work together to ensure that children are receiving the services they need.”
Dedee said that state regulations require services to be rendered in the child’s natural environment. But with rates decreased for home visits and increased for services in facilities, he also wants to see a clearer definition of “natural environment” so that providers don’t shift services from home care to facilities based on the higher reimbursement.
Another obstacle
Statewide, the rate changes are expected to save approximately $34 million. Some wonder whether that will cost more as the infants and toddlers grow up. Experts in early intervention cite reports that say every $1 spent on the youngest children saves $5 when the kids are older.
“The impact to the budget for 2010-11 may get you where you want to be,” said Beth Grier-Leva, director of the Regional Early Childhood Direction Center at Monroe No.1 BOCES in Fairport. The program does not offer programs but provides referrals and support for early intervention and preschool children and their families. “But in the long term, are you going to see effects of that three, four, five years down the road.”
Beth Carey’s 4-month-old son, Henry, has Down syndrome. In February, he started physical therapy and special education as part of early intervention.
“I want him to have his own life,” said Carey, who is a nurse and works with developmentally disabled adults. “I want him to have every opportunity every other kid will have.”
Chris Berdan’s son, Frederick, was diagnosed at 10 months as having a chromosomal abnormality. He’s now 19 months old and has low muscle tone, significant muscle weakness, vision impairment and most likely cognitive impairment. He receives physical therapy twice a week, occupational and vision therapy once a week, and speech therapy twice a month at home.
Even though Berdan was trained as an elementary educator and reading specialist, she was at a loss for how to help her son.
“He’s just learning to stand,” she said.
Frederick’s lack of mobility has made it hard for him to explore his world, which puts him behind even more. Berdan, of Pittsford, said that if Frederick’s therapists have to cut back on visits, he may regress because they won’t be working with him, or teaching her ways to enhance her son’s skills in his everyday life.
“Is this going to throw an obstacle in his path? He already has so many obstacles to overcome. We need to give all these children the best chance they can to be productive members of society. When anyone becomes a productive member of a community, that benefits everyone.”
From The Rochester Democrat Chronicle. In the picture, Chris Berdan of Pittsford, N.Y., right, says her son Frederick benefits from sessions with physical therapist Pia Stampe. But she worries that state budget cuts will impede Frederick’s progress.