Jeff and Rebecca Reno often spend evenings on the floor with their children, Bennett, 4, and Cooper, 18 months. It’s the time after dinner and before Jeff reports to his night shift at FedEx, the time when the family can unwind a bit.
“The kids like to play with Jeff’s hat and ID badge,” Rebecca Reno said.
Cooper is starting to develop his own little personality, Rebecca Reno said. At times, Bennett seems pestered by his little brother’s invasion, but evenings are calm. The brothers constantly compete to be heard and noticed. But there’s really no need. Their parents are always paying attention to them.
“Having kids with special needs is hard sometimes, and sometimes it’s even a heartache,” Rebecca Reno said. “But when I have those moments to step back and look at it — for me, it’s a privilege.”
The Reno family faces a tremendous challenge: Bennett has Down syndrome; Cooper has cerebral palsy. Jeff and Rebecca Reno do everything they can — every day — to help their children lead full lives. Fortunately, they have help from Missouri’s First Steps program.
First Steps is an early-intervention program designed to help the parents of children with developmental disabilities, providing physical, speech and developmental therapy for children from birth to 3 years old.
“The therapy is delivered where the children live, learn or play — at home, day care, Grandma’s, a park or a pool,” said Gerti Motavalli, the physical therapist who works with the Reno family.
As of June 2006, the central Missouri region, which includes Boone and Cole counties, had 296 children enrolled in the program.
The goal of First Steps is to “build a family’s capacity to work with a child,” said Joyce Jackman, coordinator of early intervention services for the Missouri Department of Elementary and Secondary Education.
First Steps was established as part of the federal Individuals with Disabilities Education Improvement Act. Missouri’s First Steps program was implemented under then-Gov. John Ashcroft.
But in 2005, Gov. Matt Blunt’s budget left out the entire $25 million state budget for the program. After concerned parents protested, the legislature responded by completely restructuring the program and authorizing a $14 million annual contribution from the state’s general revenue fund.
While the actual services have remained the same since the restructuring, the Renos and others worry about First Steps’ future, and they also worry about a reduction in services. Just last month, Missouri State Auditor Susan Montee released a study showing that First Steps is not reaching enough children with disabilities because of strict criteria the state imposes. Nationally, Missouri’s First Steps Program ranks 45th in the percentage of children served to age 3, according to Montee’s Web site.
“I don’t feel that they’ll do away with it, but I’ve talked to parents in other states that get therapy only once a month,” Rebecca Reno said, comparing those anecdotal reports to the three therapy sessions Cooper receives each week.
Monthly fees for services rendered by First Steps are based on families’ income levels and the amount of services they require. The Renos pay only a few dollars a month. Before the restructuring in 2005, however, they paid nothing.
Other than the monthly fees, the Renos have escaped much of the impact of the program’s changes. It was a matter of timing.
Before he was born, Bennett was diagnosed with Down syndrome, a condition that causes developmental delays. The Renos quickly entered the First Steps program and were able to begin therapy sessions when Bennett was only 7 weeks old.
Cooper exhibited no indications of developmental delays when he was born. Motavalli, who was working with Bennett at the time, noticed when Cooper was about 11 weeks old that he wasn’t opening his hand properly.
After consulting other professionals, Cooper was diagnosed in February 2006 with cerebral palsy, a motor disorder resulting from damage to the central nervous system. Still, Motavalli said it was difficult to get him enrolled in First Steps. She had to make several calls to program coordinators, and it took her five weeks to prove that Cooper met the 50 percent threshold for developmental delay.
At the time, Bennett was graduating from First Steps, and the state’s reorganization of the program had not taken place yet. Motavalli and Bennett’s occupational therapist, Kim Westhoff, were able to continue working with the Renos — this time, with Cooper.
The timing of Cooper’s diagnosis could not have been better, Motavalli said. “For Cooper, if we hadn’t started so young the problems could get bigger.”
The Renos have worked First Steps sessions into their regular schedule. Rebecca Reno wakes the boys up every morning to get them ready for the day. While she makes breakfast, Jeff comes home from working his shift for FedEx Freight. Then Rebecca Reno takes Bennett to school by 8:30 a.m., bringing Cooper along. Three days a week, after Rebecca Reno and Cooper return home, Cooper has an hour of physical and occupational therapy with Motavalli and Westhoff.
The therapists also spend much of their time teaching Jeff and Rebecca Reno techniques they can use with their children. Rebecca Reno said Motavalli taught her how to strengthen Cooper’s torso muscles, which are necessary for activities such as sitting up and walking without a limp. Many of the exercises can be worked into the children’s playtime.
State law prohibits insurance agencies in Missouri from denying First Steps claims, but the rule doesn’t apply to the Renos. They’re insured through Jeff Reno’s employer, which uses an Arkansas-based company that’s not bound by Missouri law. The Renos’ claims bypass insurance so that they pay only the service charge to the service charge. Rebecca Reno said that if that weren’t the case, she’s unsure what regular claims would do to the family’s overall insurance cost.
“If it did go to the insurance, then what would it do to our lifetime maximum? What would it do to our premiums?” she asked.
While Jackman, of the state education department, said some features of the new program are designed to ease pressure on families, it’s also possible that First Steps claims could affect lifetime maximums.
Participants’ insurance companies pay the first $3,000 of First Steps treatments, and First Steps pays for services above that amount. In addition, parents are often required to pay a nominal monthly fee. Another little-used payment option allows parents to opt out of using their insurance coverage and instead choose to bill the entire cost of services to First Steps. The option of bypassing the insurance company requires that families pay the maximum $100 in monthly fees. Finally, an insurer can relieve premiums and costs by making an annual contribution to the state equal to 1 percent of the company’s entire First Steps cost for the year, not to exceed $500,000.
Jackman said the education department likes the direct contribution to the program because it doesn’t affect parents’ insurance and can save the state the time and money of pursuing claims.
Along with payment methods, the state has also made changes to First Steps that hinder communication and make it more difficult to find therapies, Rebecca Reno said. A doctor must diagnose a child or a certified therapist must prove he or she has a 50 percent developmental delay, a standard that State Auditor Montee’s study cited as a problematic barrier to providing services to all eligible children. First Steps will no longer allow the diagnosing therapist to treat the child; once the diagnosis is in hand, the parents must find another therapist to provide the services.
The diagnosing therapist must write a report and deliver it to a treatment therapist, which Motavalli said delays treatments. Also, Motavalli said she can’t make judgments on the best treatments for a child based solely on another person’s reports.
“I have to do my own evaluation,” she said. “It’s less cost-effective, and we lose a lot of time.”
Jackman said the program’s rules are intended to meet federal standards set by the Individuals with Disabilities Education Improvement Act.
“We were relying too heavily on individual decisions, not teams,” Jackman said.
The requirement to have one therapist diagnose and another therapist administer treatment makes it especially hard for regions of the state without a large number of therapists to find enough service providers.
“Even some hospitals can’t find occupational therapists and physical therapists,” Jackman said. “Often, we have shortages, and that’s a challenge.”
Jackman said the education department is offering incentives such as travel reimbursements to encourage more therapists to enroll in First Steps.
While questions remain about First Steps, Jackman predicted the changes will boost efficiency.
“Our hope is that there will always be First Steps,” she said. “We must operate in the most effective way possible.”
Rebecca Reno said she hopes that’s true. First Steps, she said, is irreplaceable.
“I don’t know if I would have been able to provide for my children what they are providing,” she said. “You can provide as a parent, but you’re not educated the way they are. The success that we have seen, I can’t contribute enough to having First Steps there.”