Program for disabled babies, toddlers would lose funding in governor's proposed budget
By Marty Denzer
Catholic Key Reporter
NORTH KANSAS CITY - The little boy toddles three or four steps before sitting down with a thump on the floor, and crows with delight at his accomplishment. Jacob Coffey, 19 months, is one of 8,041 children who will be affected by the elimination of the funding for the First Steps program in Missouri Governor Matt Blunt's 2006 budget recommendations.
Marty Denzer/Key photo
First Steps special education instructor Kim Litscher holds 19-month-old Jacob Coffey on her lap while he learns about "tickly things." Jacob was born without eyes, and benefits from Missouri's birth-to-3 program for disabled children.
Jacob was born with Anophthalmia - he has no eyes, and is blind. He has been receiving intervention therapies from First Steps through the Children's Center for the Visually Impaired since he was one week old. First Steps is Missouri's early intervention program for children from birth to age 3 who have been diagnosed with physical or developmental disabilities.
When the Individuals with Disabilities Education Act, first enacted in 1975, was amended and reauthorized by the U.S. Congress in 1989, it provided an opportunity for states to partner with the U.S. Department of Education to create a voluntary early intervention system for severely disabled children and their families. Missouri has participated in this program since 1989.
Jacob's mother, Julie, said that through First Steps, Jacob receives specific therapies and teaching five days a week, either at home or at a neighborhood swimming pool. Special instruction teachers Kim Litscher and Sharla Sommer have been working with Jacob on Mondays. Litscher is a certified early childhood special education teacher who works at the Children's Center for the Visually Impaired and also provides special instructions at a child's home. She also serves as a mentor for Sommer, who is working on her master's degree in early childhood special education at the University of Kansas.
Coffey, a member of St. Charles Borromeo Parish in Oakview, has been able to stay at home with Jacob, because of First Steps' funding.
Litscher sat on the floor, coaxing Jacob to toddle toward her. When he reached her, he threw himself into her arms and onto her lap. She positioned a book called "Giggly-Wiggly-Snickety Snick" on Jacob's lap and explained that the book was all about touch. A child without sight learns through taste and touch to identify objects in his or her world, she said.
She ran Jacob's fingertips over a series of "bumps" on each page to familiarize him with Braille's raised dots, reading the words printed on the page.
"Let's read about hard things, Jake," she said. She then encouraged him to open an envelope and pull out something hard. A rock. Jacob grabbed the rock and stuck one end in his mouth.
"How does the rock taste? Probably kind of dirty and gritty."
The exercise continued with Jacob touching and tasting soft things (a small blanket), bumpy (a golf ball), smooth (Listsher's face), sharp (a pencil), and tickly (a feather).
"Are you going to eat the feather, Jacob? It'll tickle your tummy!" Litscher said with a chuckle.
At the end of the session, Litscher suggested that Coffey continue to work on stomping and left, right, up and down concept games with Jacob.
Jacob also receives occupational, physical and speech therapy. He has just begun pre-Braille instruction.
Litscher said the proposed First Steps program cut would have a big impact on the enrollment at The Children's Center for the Visually Impaired.
"CCVI is for blind or vision-impaired children from birth to school age. Most of our enrollment comes from the infant toddler home-based program," she said. If funding for the program is cut and First Steps is eliminated, it will have a big impact on the kids and their families. We'll have to figure out another way to get the kids the therapies and special instructions they need."
The cost to provide First Steps services was $2,976 per child in 2004. In a statement from Governor Blunt on Feb. 9, he proposed changing the program so that private insurance and Medicaid would pay the costs of the First Steps program.
According to Litscher, private insurance rarely cover the costs of the program and "never the costs of special instructions because they are educational and therefore not therapeutically necessary."
Coffey added, "If First Steps is cut, Missouri will be the only state without a birth-to-3-year-old program for children with severe disabilities."
"People who aren't around children with disabilities all the time don't always realize that skills like walking and talking may have to be taught, not just assimilated. Children with disabilities may have to be taught to talk or communicate in some other way. They have to be taught motor skills. If these kids go to school without the necessary skills to help them succeed, it will cost the school districts more to teach those skills. I don't think the governor has thought it through."
Mary Lynne Dolembo, executive director of the Children's Center for the Visually Impaired, outlined the increased costs to the school districts if funding for First Steps is cut. "Every $1 invested in our special needs children saves the State of Missouri $7 in years to come for more expensive services, like speech therapy and Braille instruction," she wrote in a letter to parents of First Steps children on Feb. 2.
Because of its participation in the First Steps program, Missouri is entitled to federal funds to support it. According to the state's Senate Appropriations Committee estimates, if funding the First Steps program is eliminated from the 2006 budget, it will save $23.3 million. However, $10 million of that comes from matching funds from the federal government.
Coffey and her husband, Dean, e-mailed several Missouri congressmen, asking for help in restoring funding for First Steps. She said Jerry Nolte (R-Gladstone) had responded that he planned to work to save First Steps. "Brian Baker (R-Belton) wrote that too many people in the First Steps were abusing the system," she said. "How can you abuse the system at 18 or 19 months old?"
Missouri is one of eight states that have stringent eligibility criteria for First Steps. Children with the following conditions are eligible:
A diagnosed physical or mental condition associated with developmental disabilities such as Down Syndrome, spina bifida, cerebral palsy or very low birth weight with additional complications at birth.
A developmental delay of half of what would be expected for a child of that age (birth to age 3) in one of the following areas: cognitive, communication, adaptive, physical, or social/emotional development.
Jacob's 4-year-old brother, Seth, is hard of hearing, and wears hearing aids in both ears. The First Steps speech therapy program's helped him, and his mother doesn't expect Seth to need additional speech therapy when he begins school at Meadowbrook Elementary near their home, where oldest brother, Isaac, attends.
"I can go back to work as a math teacher if I have to, but I can't imagine what families who won't qualify for financial help to enroll their children in First Steps will do," Coffey said. "It's not only a therapeutic and educational service; it's a good support system, too. Jacob mixes up his days and nights sometimes. I can't sleep through the day because I have another little boy here. I can call the First Steps people at CCVI for ideas and encouragement.
"If First Steps is still there, the plan is to start Jacob in CCVI's preschool at age 2. He'll go there until he starts school at Meadowbrook, which shouldn't be a problem as long as his cognivity is normal, and it is. Only his eyes didn't develop."
"I can't imagine not having First Steps," Coffey said.