‘He just took off’: Parents tout benefits of troubled First Steps program, call for more funding

18

AutoInsuranceMM.Info – Inexpensive health insurance – ‘He just took off’: Parents tout benefits of troubled First Steps program, call for more funding

On a recent afternoon, Jazz Witkowski fidgeted by the family piano while his dad played some chords. When Jazz’s impatience got the better of him, he jumped in, repeating what his dad had played, then adding his own flourish. A second attempt was less successful, and the notes clashed, but Jazz steamrolled ahead, refusing to let his dad back on the keys. All in all it was a pretty ordinary performance for a nine year old with a year of lessons under his belt.

What made it extraordinary, however, is that Jazz is deaf.

The official diagnosis, given shortly after he failed a series of early hearing tests at birth, was “profoundly deaf,” meaning Jazz can’t hear sound at all. But before his parents had time to fully grieve the life they assumed he’d never have, Mississippi’s early intervention program stepped in.

Jazz Witkowski at the Pittsburgh Zoo in summer 2018.

When he was three months old, the First Steps program enrolled Jazz in an intense regimen of speech, occupational and physical therapy. By the time he aged out of the program three years later, he could not only read lips and use sign language, he’d also learned to interpret the sounds his cochlear implant allowed him to hear. Now a fourth grader, Jazz takes mainstream classes. When he jumps on his mom’s iPhone for a chat, his voice is high pitched and his consonants sharp. The only obvious sign of his hearing impairment is the white cochlear implant poking through his hair.

“They taught him how to live in a hearing world,” his mother, Amy Witkowski, said.

“I know he wouldn’t be who he is today — this above average student with above average language — without First Steps. Of course, he’s still average in math. He’s average in a lot of ways, but isn’t that great, too?”

Transformations like Jazz’s are why his former First Steps speech therapist, Rita Hall, said she loves working with young children most.

“The progress you can make with babies, it just doesn’t compare,” Hall said. “You can change everything in just a few sessions.”

The reason for this is neuroplasticity, the ability of the mind to grow and forge new connections. Young children have an extremely high degree of neuroplasticity, but it declines with age. As a result, since the 1980s the federal government has invested  billions of dollars into early intervention programs like First Steps in all 50 states. States like Mississippi that accept these federal dollars must then provide treatments to any child under three who qualifies.

But Mississippi isn’t providing these services to all of the children who qualify. Parents told Mississippi Today that their children have been referred to services, only to see them delayed for months or never materialize at all.

The reason for the lack of services, according to more than two dozen therapists and First Steps employees who spoke with Mississippi Today, is that the program is critically underfunded. While First Steps received $4.1 million in federal funds for its program this year, which is in line with amounts the federal government gave neighboring states, Mississippi contributed just $1.3 million, a fraction compared to its neighbors.

This lack of financial resources translates to a lack of overall resources. First Steps therapists, who earn less than half of what their counterparts in Tennessee earn, have ended their contracts with the program, meaning some parts of the state don’t have enough—or at times, any—specialists available to treat the kids. Service coordinators, who connect families with therapists, juggle caseloads more than double the required limit, making it easier for these kids to slip through cracks.

The Department of Health, which administers First Steps, declined multiple requests for an interview for this story. But in an email to Mississippi Today in July, when reporting for this series began, the department’s spokesperson, Liz Sharlot, acknowledged the lack of resources, saying that “the needs far outweigh the funding that is available.”

The risk of regression

The high degree of neuroplasticity early in children’s lives also makes interruptions more devastating, according to experts on childhood learning. Because just as young minds quickly pick up skills, they can also quickly lose them.

Jaquitta Patton was warned this could happen with her son Grayson. Grayson was diagnosed with a motor delay shortly before his first birthday and began physical therapy through First Steps almost immediately. The change, Patton said, was awesome: “He just took off.”

Before Grayson Patton began physical therapy through First Steps, he could not sit up unassisted.

And then this summer, Grayson’s therapist paused services when the Department of Health, citing an administrative snafu, ordered its therapists to stop services to hundreds of children in the program, including Grayson. Ten weeks later, Patton said she’s still waiting for services to start up again. And in the meantime, she’s struggling to keep Grayson from losing the skills he acquired. Patton, who works full time, spends hours each week trying to repeat the lessons that Grayson’s therapist taught him. Sometimes she watches YouTube videos of physical therapy sessions. Other times Grayson’s therapist gives her phone pointers for free. But the difference in his progress is obvious.

“It’s a struggle every day. I’m not an expert,” Patton said. “… But it’s either that or I let him fall behind. You have to make a choice as a parent, ‘Am I going to let my baby be delayed or step up?’ I guess I’ll be the therapist.”

An investment not an entitlement

The irony is that under-funding First Steps now will ultimately cost the state more money, according to several experts on early intervention.

Over a decade ago, the Nobel Prize-winning economist James Heckman proposed what would later become known as the Heckman Equation. In it he argues that every dollar a government invests in early intervention yields up to a 13 percent return. Those children, he said, are more likely to perform better in school, which translates to better earning potential. This also means the government will spend less on costly remedial education, health care and incarceration.

Dollars spent later in that same child’s life can produce returns — but they’re diminished. As neuroplasticity declines, change requires more effort and money.

“Why in the world would someone not want to make this investment? Most investors would take a 13 percent return on investment and run to the bank with it,” said Melody Musgrove of the University of Mississippi’s Graduate Center for the Study of Early Learning. Prior to this she served as director of the Office of Special Education Programs at the U.S. Department of Education.

Jazz Witkowski on a trip in summer 2018.

Karen Price, a speech and language pathologist who runs a therapy clinic in south Mississippi, said she sees the payoff from this investment regularly. About a month ago, a child came into her clinic “pitching a fit.” His mother, frustrated with his behavior, wanted to take him to a mental health clinic. Instead, one of Price’s therapists diagnosed him with an auditory processing disorder.

“I said, ‘Give us three weeks,’” Price told the boy’s mom. “Lots of times, biting, hitting — it’s frustration with communicative attempts. And if you give them the tools to communicate, they can get out of that. That’s a kid who probably won’t have a delay when he starts school.”

If a child is in mainstream classes, they are far more likely to graduate from high school than a child in special education. Nationally, just 65 percent of special education students graduate on time, well below the 83 percent rate for students overall. And in Mississippi the disparity is worse: Just 30 percent of special education students graduate on time, according to the Hechinger Report. Those who do graduate from high school, are still less likely to graduate from college and earn less once they’re part of the workforce.

Musgrove’s colleague at the Graduate Center for the Study of Early Learning, Cathy Grace, calls early intervention “an investment not an entitlement,” and says that if the state made an investment in early intervention, it would see “drastic reductions in the number of special (education) referrals.”

“I feel like we need to have everybody understand the emergency of what we do,” said Dr. Susan Buttross of the University of Mississippi Medical Center’s Center for the Advancement of Youth. “The brain is so rapidly growing in the first three years of life that we can’t wait until a child enters first grade.”

“I believe that it’s all of our responsibilities to make sure every child has a fair shake in life, and if they do, it’s very likely they’ll be good contributors to society,” Buttross said.

A ‘bastard program’

But it’s an investment Mississippi has declined to make, year after year.

This year, Mississippi put $1.3 million of its $6 billion state budget into early intervention. In comparison, Tennessee spent 10 times that — $12.9 million — despite being roughly twice the size of Mississippi. Alabama and Louisiana, which are between 50 and 60 percent larger than Mississippi, spent $8.1 million and $11.7 million, respectively, on their state’s early intervention programs.

And while it’s clear that Mississippi spends relatively little on its early intervention program, less clear is why.

First Steps funding is cobbled together from several sources. For 2019, the Department of Health allocated $389,000 from its state general fund appropriation to the program. State tobacco funds account for an additional $189,000. And the program received another $700,000 from the state Department of Education.

Grayson Patton (center right) with (from left) his mother Jacquitta Patton, sister Madison and father Monty Patton

Practically speaking this is because the program, itself, is something of an educational-medical hybrid, even though it’s run by the Department of Health. Doctors make the initial diagnoses and referrals, but the therapies combine medical treatments like speech and physical therapy with special education techniques, such as special instructors, which are rarely reimbursed by insurance companies.

“It’s a unique program, and when it works it’s a really wonderful program,” said Hall, Jazz’s former speech therapist.

But the hybrid approach that makes the program unique also makes it susceptible to being overlooked—and underfunded—because no one agency bears responsibility for it.

“The pendulum has swung back and forth this whole time. ‘Early intervention should be part of education; it should be part of health,’” said Roy Hart, who ran the program from its inception in the mid-1990s until 2005. “Nobody ever really wanted to have it permanently as a home, so the leadership never really knew how much energy to put behind it from a legislative standpoint.”

Although both the state Health and Education Departments fund the program, neither agency’s budget contains a line item for Early Intervention.

“It’s a bastard program,” said Michael Cruthird, who retired in 2015 after more than two decades as the district coordinator on the Coast. “It’s not uniquely public health, so there were always struggles within the agency itself to advocate for the funds.”

Low investment, low returns

Currently 3,000 children in Mississippi are enrolled in treatments through First Steps, but awareness of the program’s ongoing problems remains low among lawmakers.

During a recent legislation, the chairmen of the public health and appropriations committees said they had scant knowledge of the program or any problems with it.

Gil Ford Photography

Rep. John Read, R-Gautier

“I have not heard of any problems in that area,” said Rep. John Read, R-Gautier, who chairs the Appropriations Committee. “But I’m relying on the agency head to steer me. As far as funding, you always could use more, but when you don’t have it sometimes you have to make decisions.”

Although funding is patchwork, the Department of Health runs the program, so Cruthird said advocacy for its funding has typically fallen on that agency’s shoulders. The agency also sets reimbursement rates for contracted providers, which are far lower than neighbor states and have been partly blamed for the statewide provider shortage.

But overall funding for state health has been very tight in recent years. Over the last five years, state general fund appropriations have been slashed 17 percent, from $36 million in 2014 to just over $30 million for fiscal year 2019. One consequence was that last year the department reduced the number of public health districts that oversee its First Steps divisions, from nine to just three.

“I think the Health Department has been in survival mode the last four years. You can’t have that much instability in such a short period and expect to be able to accomplish your goals,” Cruthird said.

Still, it’s an investment that takes years to mature. And, Hart, the program’s former director, acknowledges this makes less of an incentive for lawmakers who run for reelection every four years.

“Even though you’re going to save money in the long run, (their) vision right now is that anything you’re going to do has to demonstrate an immediate cost-savings or it has no merit,” Hart said.

The family connection

Of course, change isn’t swift for all children. And for every child whose delay is erased before he starts school, many more struggle for years to make incremental improvements. Children with severe cerebral palsy will often work for a few years to master an act as simple as sitting unassisted. Some never get there.

Jazz Witkowski at an amusement park this summer with his friend Gabe

Of course, even incremental improvements translate to savings. If a child with cerebral palsy can learn to sit and feed himself by the time he’s a teenager, his life expectancy more than doubles, from 28 to 64, and his risk of severe complications drops, according to a 2008 study in Developmental Medicine and Child Neurology.

But just as important, argue many therapists, is the effect that these treatments have on the families of severely disabled children. Like Amy Witkowski, many parents spend months, if not years, grieving the life they had planned for their child. And perhaps the most powerful thing that First Steps does, Price said, is to transform not only the child’s development but the parent’s relationship with their child.

“You need to see how giving these families the tools to work with their child changes the parents’ attitudes because it gives them hope,” Price said. “You see changes in the child’s behavior but also in the parents’ behavior because they feel like, ‘Now, there’s something there.’ It becomes about, ‘I can do this for my child.’”

And, as many early learning experts have pointed out, a supportive home is crucial to every child’s success.

“This kind of return makes such economic sense, especially for a state like Mississippi that needs all the help it can get,” Musgrove said.