The short-changing of disabled children in Mississippi is an old story. Mississippi Today's Larrison Campbell dove deep into how Mississippi's First Steps Program treats disabled children - when it actually treats them - in a series of stories recently. She reported last week:
Julie Foster felt cautiously optimistic when she answered the phone last November and heard her daughter’s early intervention coordinator on the other end. The Fosters had moved from Chicago to DeSoto County the month before, and while the change was hectic — even by long distance move standards — she loved her new job, a relief since it had brought them down here.Kingfish note: This was a stellar job of reporting. Such therapy is very important to the disabled child's development. The sooner it begins, the less is needed later but this being Mississippi, well, does it need to be said?
Her daughter’s transition from Illinois’s early intervention program to one in Mississippi had progressed smoothly, at least at first. Aliyah has multiple developmental delays and qualifies for a range of therapies through a provision of the Individuals with Disabilities Education Act. This federal program guarantees a variety of therapies to all children under age three who qualify. In Illinois, this meant weekly sessions with a special instructor plus speech, physical, occupational and feeding therapy — a total of 25 therapy hours every month.
But in Mississippi, the service coordinator told her, Aliyah had qualified for just three of the services she’d had in Chicago. And two — speech and occupational therapy — would be offered only twice a month. In total, Aliyah would receive one-third of the therapy she’d had before. Foster hung up the phone and sobbed.
“I kept saying, ‘Oh my God, what did I do to my child?'” Foster said. “I’ve moved her to a place where she can’t get the help she needs.”
What’s worse, Foster said, is that the speech and occupational therapy never materialized, despite numerous calls from Foster and a federal requirement that Mississippi provide them. In late March, Aliyah turned three and aged out of the program. Mississippi had only provided her with a third of the services they’d promised her.
“We’d imagined we’d have the same services (in Mississippi). I guess that was naive,” Foster said.
The Fosters are not alone. Last month, Mississippi Today reported that an administrative miscommunication had forced Mississippi’s early intervention program, First Steps, to delay services to hundreds of children.
But conversations with several First Steps parents, and current and former employees of the Department of Health, which administers the program, paint a picture of a program that delayed — and sometimes never delivered — federally mandated services to some children long before the administrative hangup.
The reason, according to these employees, is that the program is critically underfunded and understaffed. Some service coordinators, who match children with therapists and monitor their progress, report caseloads of 90 to 100, more than double the recommended caseload.
Meanwhile, these therapists are getting harder to find. Reimbursements for appointments are often delayed, according to current and former First Steps therapists who spoke with Mississippi Today. And the rates the program pays remain low compared with Medicaid and neighboring states, forcing several therapists out of the program. This means parts of the state don’t have enough — or at times, any — therapists providing the services this program guarantees.
“It’s a mess,” said one longtime service coordinator who spoke to Mississippi Today but asked that her name not be used in the article. “When I first started, we had lots of different agencies that contracted with us. And then, as they’ve not gotten paid, they’ve decided they don’t want to work with us anymore. So the providers who are available in many areas are very few and far between.”
States are not required to participate in an early intervention program, but all of them do. Under federal rules, states must ensure that children begin their recommended therapies within 30 days of qualifying.....
Therapists who’ve left Mississippi’s First Steps program cite multiple reasons, from reduced reimbursement rates for appointments to billing delays to a decision to transition all contracted workers for the state into independent contractors. But all amount to the same thing: a funding shortage.
“It became a nightmare,” said Rita Hall, a speech therapist who contracted with First Steps until 2016, when she said the billing requirements for independent contractors became too onerous. “It was almost impossible to deal with everything unless you’re Wonder Woman.”
Doctors have told Susan Stearns that with the right therapy regimen, Oscar might eventually sit up unassisted or even walk. Both abilities would dramatically increase his life expectancy. And knowing this, his mother said, makes these service delays even more agonizing.
“We were told again and again that these are the years that are the most important for accelerating the possibilities for his life,” Stearns said.
Stearns is referring to neuroplasticity, the idea that brains of very young children are better able to grow and forge new connections than brains of older children. This means shorter, less expensive therapies in early childhood often get better results than longer, more expensive therapies later on.
“If the state invested in early intervention, we’d see in less than five years drastic reductions in the number of special ed referrals (once children enroll in school),” said Cathy Grace of the University of Mississippi’s Graduate Center for the Study of Early Learning, which researches the impact of educational programs on young children.
“Early intervention is not an entitlement,” Grace said. “It’s an investment.”
But for these parents, it’s also a ticking clock. That’s why Stearns and her husband have discussed moving just over the state line to Tennessee, which puts ten times more state funding into its early intervention than Mississippi. Julie Foster and her husband have also discussed relocating. In June, she gave birth to Aliyah’s younger sister, Sophia. If Sophia needs early intervention, Foster said they would “a hundred percent” consider a move up to Memphis.
“You do what you have to do to get your kid the services they need,” Foster said.
A lack of investment
Mississippi’s top officials have acknowledged how crucial these first few years are for a child’s development....
This year, Tennessee budgeted $12.9 million in state funding for its early intervention program. But Mississippi spent just about one tenth of that — $1.3 million — on its own program, despite having a population roughly half the size of its neighbor to the north.
Other surrounding states also invest much more into their early intervention programs. Alabama’s population is 60 percent larger than Mississippi’s. But this year Alabama will spend $8.1 million on early intervention, five times more than Mississippi spent. Louisiana, which has a slightly smaller population than Alabama, will spend $11.7 million, or eight times what Mississippi spent.
These disparities add up at every level of the program. Five years ago, Mississippi narrowed its eligibility criteria, from a 25 percent delay in one area of development to a 33 percent delay in one area and a 25 percent delay in two or more. Currently, 32 states have a lower threshold than Mississippi for early intervention eligibility. One of those is Illinois, where Oscar Stearns and Aliyah Foster were initially diagnosed.
The Department of Health said the change was made to “better align MSDH’s definition of developmental delay with the one used by (Mississippi Department of Education, which operates IDEA part B) for children 3-9 years of age.”
But others said there was a different reason.
“Money,” said Michael Cruthird, who retired in 2015 after more than two decades as the district coordinator on the Coast and was part of the conversations about changing First Steps eligibility. “… You look better if you have a smaller pool (of children) to draw from. Things run more smoothly. But it all comes down to money. If we had unlimited resources we’d serve more children because it makes more sense.”
Therapists who contract with Mississippi’s First Steps also earn significantly less than providers in neighboring states. First Steps pays special instructors $25 for an hour-long session in a patient’s home. In Louisiana, those instructors make $59.80 for the same session. In Alabama, it’s $36. In Tennessee, it’s $80 — more than triple what the same provider would earn in Mississippi, according to data obtained directly from each state’s early intervention program.
“I enjoyed it, and the employees I had working for me loved working with the babies, but it just wasn’t profitable at all,” said Joyce Bates, who ran a clinic offering physical, occupational and speech therapy for First Steps.
Service coordinators, who work directly for the Department of Health, receive $17.50 per hour compared with $21.67 in Louisiana, and many juggle more than two times as many families as coordinators in that state. In Alabama and Louisiana, service coordinators have an average caseload of 45 families. In Mississippi, the average caseload for coordinators is 60 families, according to data from the Department of Health.
But a district coordinator who runs one of Mississippi’s nine regional First Steps programs said that several service coordinators working under her manage about 100 families, more than double the optimal caseload of 45. The service coordinator who spoke with Mississippi Today works in her office and confirmed this, saying her own caseload is currently about 90 families.
“That’s not sustainable,” Cruthird said, adding that quality service is bound to suffer.
Service coordinators are required to make contact with all of their families and therapy providers on a monthly basis, and physically meet with them once a quarter. In rural parts of the state, one coordinator will be responsible for children across three or four counties.
“I’m keeping the road hot,” the service coordinator said.
Since service coordinators are responsible for matching children with therapists, their backlog can become the program’s backlog. Currently, 2,045 children receive services through Mississippi’s First Steps. Another 1,009 — half as many — are either waiting to be evaluated or matched with therapists, though the Department of Health was not able to confirm how many of those kids have been waiting longer than the federal time frame.
“I currently have kids waiting to be evaluated who will age out (of early intervention) in the next three months. So by the time I get them evaluated, they’ll be going into the schools,” said the service coordinator. “We have cases going over 90 days. That’s breaking federal regulations. Sometimes it’s parents who can’t make it happen in time because they have work or they just don’t call you back — there’s definitely exceptions. But there are issues on our end.”
“Would fewer families fall through the cracks if we were compliant (with caseloads)?” The service coordinator sighed. “Probably.” Rest of article.
24 comments:
Hi, I'm from the MS government and I'm here to help you...or not.
The parents were not only naive, they were irresponsible. This great new job overshadowed the welfare of her child, and in liberal/progressive Chicago style, she a-s-s-umed that the government would take care of everything. You know, like the nanny-state where she previously resided.
I wish this child the best.
If you have a young child with that many issues, but the child is currently in a good situation, why, oh why, oh why, would you move? Especially to a state like MS that is on the bottom of offering any type of specialized education/developmental services.
4:55 PM summed up what Mississippi is all about - a state that does not care about the sick, elderly, disabled, and poor.
It’s all about heritage and tradition. Always has been. Dumb, fat and poor. Never change dear Mississippi!
5:41 - Was your application for benefits denied again?
The title of this article says it all. "What DID you DO to YOUR child?" Correct. You DIDN'T think things through, and wrongly believed that the universe was somehow going to take care of your children cradle to grave. Did you know that you might not be able to afford children in the first place? Then starting a family prior to being fully prepared has severe consequences, that YOU do to your children because YOU were short-sighted.
Instead of the author of the article tugging at everyone's heartstrings to get attention, they could better use their platform to educate the public that all government services are subject to available resources....whether that be money, or actual people to provide the service. Next thing ya know, we'll hear about a judge court ordering an agency to provide services, for which there is no money, space, or ability. Example? See the idiot David Ishee from Gulfport on the MS Court of Appeals.
@5:41,
Not sure what you mean by take care of the sick, elderly, disabled or the poor... I'm a physician at UMC in Jackson and have lived in Mississippi for nearly 7 years now. I grew up in New Hampshire and I would say m ississippi takes care of these people everyday... not only that but your obviously under the impression that it's the state's responsibility to take care of all the above. I can tell you now based on your ideology that we would be in bad bad shape if you were in charge of state budget and government. That being said what would you propose we do to change this as you seem to want to have nearly everyone "taken care of"?
Fifty years ago people from Mississippi moved north to Chicago and Detroit under the false assumption that there were streets of gold where all their wants, needs and cravings would be met by government. (and it probably worked for awhile)
Fifty years later people are moving from Chicago and Detroit back to Mississippi under the false assumption that Mississippi will meet their needs since their north-based-dreams fell apart.
Mississippi has way more than its share of obese, lethargic, slothful non-producers who crank out kids they can't care or provide for; however, it's not by choice...and we don't advertise ourselves as a haven for system abusers and the entitled....it just works out that way. Subtract those numbers from our midst and watch this state float to the top in every measurable category imaginable.
The title of this article says it all. "What DID you DO to YOUR child?" Correct. You DIDN'T think things through, and wrongly believed that the universe was somehow going to take care of your children cradle to grave. Did you know that you might not be able to afford children in the first place? Then starting a family prior to being fully prepared has severe consequences, that YOU do to your children because YOU were short-sighted.
Yes, I'm sure the parents planned on having disabled children.
I hate to break the news to everybody, but a disabled child who hasn't been given the chance to become an independent adult, will be more expensive to you later.
Pay now or pay later. You don't seem to want to prevent disabled children from being born so...
Excellent reporting! Shame on us as a State and a society for failing these children and their families.
Sorry Kingfish, but this is not about being insensitive or hateful. In fact -it's the most loving approach....which is this: Disabled or not disabled, IF/WHEN you have the desire to be a parent, you had better factor in what the possibilities (COSTS) are going to be, including special needs. Those days are coming to an end where people just have kids and say, "Oh, well. Guess we'll have to get them on disability", because that "status" will no longer guarantee assistance.
I’m with you, 11:37 (and I assume that was you up at 5:54, as well?) I have long wondered why people are so pie-in-the-sky starry-eyed about rushing to become parents without facing the real possibility that something could go BADLY wrong. I agree with you that nobody should get pregnant if they don’t think they can afford the unexpected expense of a damaged kid. My word, perfectly healthy children are costly enough, especially here in Jackson where a huge K-12 tuition bill is a given. There is no shame in deciding that children are a luxury one simply can’t afford! Don’t expect society to foot the bill for your every misfortune. You are doing the kids no favor.
Kingfish, once again, wanders off into the ditch of emotion and sympathy.
Dang 1:58, don't you understand? To many folks EVERYTHING is the government's responsibility. In a society that has taught a large portion of its citizend that they are entitled to a free cell phone (free, as in paid for by the government using fees put on those of us that pay for cell service) they certainly should expect all the costs of not just paying for professional services for their child but also locating and insurING the availability of an adequate supply of those professionals.
Yes, I have empathy for these parents and their kids. But i also grew up with these issues all around me and nobody then had any idea of expecting the government to pay the costs associated with 'special needs'. A little personal responsibility goes a long way and if these parents aren't willing to pony up, I have less compassion.
4:17, people like us are unpopular on sites like these. The cloak of anonymity allows us to say what many feel, but cannot say in public because pragmatic, unsentimental common sense would be decried as “inhuman”. But the plain fact is, we as a society can’t afford everything for everyone. And now we are seeing old people kept alive to ridiculous ages! Have you noticed how many more obituaries list the death age as a triple digit? No mention made of what the quality of (endless) life was, or how drained the finances of the families are, keeping the old dears in expensive “homes”. Did you see Sen. McCain’s mom at his funeral? She is 106!!! And she’s far from unusual these days. And it’s only going to get worse, as the Boomers live on and on and on.
If I may offer some thoughts from the sensible middle, three or four Taterhood Parkway-type fiascoes removed from the expense side and we could easily fund a reasonable program. On the other hand, folks ought to be at least partially responsible for their own expenses and situation. Obviously, no one plans to have disabled children, but the idea that folks ought to have some ability to take care of their children should the unfortunate occur isn't unreasonable.
Reasonable people have no problem helping those who despite their best efforts need a helping hand, but reasonable people aren't interested in being the source of support for those who would take advantage of any and all.
Based on nothing more than what is reported, I'd say that the parents made bad decisions and Mississippi failed yet again to make common-sense economic decisions. In other words, no surprises on any front.
Only the sad surprise that a journalist wanted to pimp this unfortunate situation to garner support for a socialist ideology that does not morally serve a community.
@5:54: “take care of your children cradle to grave”
@9:28: “system abusers and the entitled”
@1:58: “expense of a damaged kid”
@4:17: “if these parents aren’t willing to pony up”
@5:24: “can’t afford everything for everyone”
@9:07: “parents made by decisions”
How many of you know about or have used the First Steps program? It’s obvious that you have not and think the program is simply for system abusers who are trying to take advantage of the state when they “hit the jackpot” and got a “damaged kid.” If you were able to see past your pre-conceived notions, you would acknowledge that it is a small program only available for the first three years of life. It is designed to provide education about development and childhood needs to people who are often surprised by an unexpected diagnosis and struggling to understand the medical needs and mlsnguage that go along with the new journey. It also provides treatment services to children early on whose parents who may be hearing words such as “speech pathologist” for the first time in their lives. If you knew anything about the program, you would know that parents of all economic status in Mississippi typically contact First Steps when They first learn of their children’s diagnosis. That’s right, you’re friends with children with special needs or the very people using this program. And they have benefited from it. Did you know First Steps charges primary insurance if it is available to earn back some funds into the program? You probably don’t know any of thisbecause your preconceived notions proceed you.
@ 12:21 Yes, the population of these unfortunate children/families is small (thank goodness for them)....but the problem is articles like this one blow-up the ideology into mainstream messages to promote socialism in general. That's how the two words "general welfare" in the U.S. Constitution got leverage into the trillions of dollars boondoggle of public service agencies that is our federal government - that were NEVER meant to even exist! It's a slippery slope when you exploit unfortunate children to promote a political ideology. That game has crashed and burned. People are responsible for their children and their plight, regardless of what that is....government was never meant to guilt everyone into assisting at every term. Not to long ago, things like this were considered a "family matter" and families for ages soldiered through doing the best they could within their given means without asking for a thing...except for God's strength.
@4:05 if you think families of people throughout history “soldiered on” to care for them and these Individuals benefitted, flourished, and were nurtured by society, you are in serious need of a history lesson.
@6:57 Sooo, you think the gubmint should ensure that every human being regardless of level of need should flourish through tax dollars? Who ever said they weren't nurtured by society? Or didn't GREATLY benefit from the charity and generosity of other families, their church, and whole communities back when we had a sense of such? Sheesh. YOU need the history lesson pal. NOW everyone's considered a victim because the government failed them. What's changed is the stupid expectation that a government's even supposed to meet their needs in the first place.
@7:39 who said victim? No one but you. I don’t see children born with disabilities in need of therapeutic guidance and resources as victims. YOU do. YOU are so angered by assistance to others that you lump every program in to your “they are the problem” and “they are abusing the system” bitter paint strokes. You are unable to be discerning. And your argument that the vast majority of people with disabilities, developmental disorders, and mental illness have been historically nurtured and taken care of by the community and churches shows that you have rewrote history to fit your own “it was better in my day” mentality. And by the way, pal, your bitterness is so contradictive to your assertion that churches take care of people. Are you part of that church? God help us all. In short, not all government-funded programs are bad. Not all are good. Programs that can prevent institutionalization and give babies with disabilities a head start might possibly be helpful if implemented correctly. Maybe? You think? Never mind. I know your answer.
@8:03 Who said they were abusing the system? Good grief. Saint Francis: "If we start by doing what is necessary, then doing what's possible, suddenly you're doing the impossible." Mississippi isn't even doing what they're supposed to be doing with billions in tax dollars on such a fundamental level, there's no need to even discuss the awesome possibilities like helping these children. Once constitutionally mandated services are fulfilled, then we can work toward helping those in need, not the other way around. That's why the state, and the country, are bankrupt. Yes, I agree with you, you're just not getting it. It's Mississippi leadership that has squandered billions of dollars that has hurt these children, and all Mississippians.....but someone has been getting rich....believe it.
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