Budget Impasse Threatens Early Intervention Services for Babies

When Tiffany Dasher's daughter, Briella, was born, the unexpected happened. Following an uneventful pregnancy, Dasher, a Madison County resident, expected a rather routine labor and delivery, but shortly after birth, Briella was placed on oxygen and a heart monitor. Later, Briella was also equipped with a gastrostomy tube, or g-tube. Now, at 22 months old, Briella has a Prader Willi Syndrome diagnosis. As a result, she faces battles with hypotonia, feeding and breathing issues, obstructive sleep apnea, and possible heart complications.

"The days after Briella's birth were overwhelming to say the least," Dasher states. "She was unable to take her food by mouth, and she was attached to a steady stream of machines. We did not know what to do or what to expect."  It was then that Dasher was directed, by the medical team at Cardinal Glennon hopsital, to Early Intervention (EI). "EI was our beacon of hope for Briella," she said.

A Promise of Progress

EI provides therapy services to children from birth through three years old who have special needs and developmental delays. Through EI, many children close developmental gaps before they reach school age, which results in less money spent on future special education costs.

Dasher's daughter, Briella, and
her Physical Therapist, Shawnery

Darcy Armbruster, a Cook County Physical Therapist, has worked in EI for 3 years. "The services offered through EI include physical, occupational, speech, feeding, and developmental therapy in addition to social work services, care coordination, adaptive equipment, and vision and hearing therapy. Some of these services are only available to kids in Early Intervention and cannot be utilized at outpatient therapy clinics through the traditional insurance route," Armbruster explains.

Dasher's daughter utilizes many of the services that EI provides. "When Briella started EI, she was severely delayed," says Dasher, "but now, with the help of developmental, physical, occupational, and speech therapy, she's crawling, climbing and walking with assistance. She even feeds herself and signs to communicate with us. She just gets a little stronger each week."

Thirty minutes away, in St. Clair County, Nicole Pederson relates to Dasher's experience. Pederson's son, Jackson, was born 13 weeks premature and faced a slew of medical complications ranging from anemia to brain hemorrhages. "Prior to EI, all we had to go on was what the doctors thought and what the books on premature child outcomes said. The list was endless: Autism Spectrum Disorder, Attention Deficit Hyperactivity Disorder, behavior problems, severe delays, and learning problems. I feared my child wasn't going to have the same experiences as his cousin who is just 6 weeks younger. I worried that my son was going to struggle and that he would be left behind," Pederson states.

Like Briella, Jackson receives multiple services through EI, and he has made tremendous progress. Pederson says that when Jackson began in EI, he had a 70% delay across the board. "Now, he is between 40–20 % delayed," Pederson says with a smile on her face. "He has made clear strides through the help of EI. His texture and food aversions have dramatically decreased with the help of occupational therapy. His core strength and ability to be mobile has increased due to the help of physical therapy, and even though we have just started with speech therapy, he has drastically improved his vocabulary and vocalization."

A Devastating Reality

According to advocates, approximately 20,000 families in Illinois receive therapy through EI—Briella and Jackson are just two of them. Currently, families' insurance, along with a monthly family fee, pay for much of the EI services that children need, but some additional funding also comes from the state. Without a budget, EI therapists, families, and children remain in limbo. Many parents fear that these services will slowly become less accessible.

For Jackie Bruns, of Madison County, this fear has become a reality. Bruns' son, Trae, has a syndrome that causes global developmental delays. When he started in EI, he was 100% delayed and received most of the many services that EI offers.

Echoing the sentiments of Dasher and Pederson, Bruns attributes the accomplishments that Trae has made to EI. "The progress is amazing," Bruns says, "Every day it's something new—from doing a new task, to climbing the stairs, to crawling and pulling up." However, Bruns knows that without a budget, Trae's days in EI are numbered. "One of his providers told us that come August, she may no longer be able to continue seeing Trae due to this budget impasse," Bruns explains.

When asked what she will do when Trae's services stop, Bruns pauses for a moment. "We would have to seek out a different provider who would have to start from scratch with him," she says, "As this budget impasse continues, I think it's going to get harder to find therapists, especially ones who have working knowledge and experience with my son's syndrome and feeding issues." Bruns takes a moment to collect her thoughts and continues, "Potentially, we may have to find a clinic to take him to, and his immune system is already compromised, so being around those germs would be detrimental to him."

Trae Bruns with his EI therapists

EI therapists come into the family home and work with both the child and the family. The therapists serve as individual contractors with the state and often pay for the equipment and toys that they utilize during therapy sessions. They also regularly wait months to be compensated by the state for services they have previously provided. During this budget impasse, therapists have been encouraged to continue to provide services, but they remain in the dark about when or if they will be paid for the services that they currently provide.

Armbruster agrees with Bruns' worry that therapists will begin to pull out of EI as the state waits on a budget. "Companies will begin to shift away from accepting EI cases," Armbruster states, "and they will move toward more of a clinic-based private insurance model." Armbruster says the unfortunate ramifications of the budget impasse will likely force kids to sit on waiting lists for months or longer to receive the services that they need. "Services like assistance with transitioning into the special education system and developmental therapy are not available through private insurance, so fewer children will be able to benefit from theses services," says Armbruster.

"The bottom line comes down to providers and companies needing to pay their own bills so they can survive," Armbruster states.

A Tough Call

Lynn Barts works as a Social Emotional Consultant for Child and Family Connections -- which serves as the point of entry for families and individuals wanting to make a referral for EI.  Barts stresses that therapists must give a 30 day written notice that services will be stopping. "This written notice allows Child and Family Connections ample time to locate other therapists who can provide services and fulfill the individualized family service plan," says Barts.

Pederson's son, Jackson,
with his EI therapist, Julie

Pederson acknowledges the unfortunate decision her son's therapists are faced with, "Our providers have been extraordinary so far through the budget impasse. They fear not being able to put food on their own tables, and yet, they have not given up on my child and have said they will continue to work with us for as long as possible."

If the budget impasse continues, Pederson is fully aware that her son’s therapists may have to stop services in order to be able to provide for their own families. "If Jackson loses his services because of the budget impasse, it would be devastating," Pederson claims. "While each of his therapists is providing crucial help for him to close his developmental gaps, we would be forced to have to decide which therapies were the most important, as we could not afford all the services he needs without the help of the state."

Barts encourages families to contact their legislators and share their personal stories.  "Family stories are what will make a difference from my perspective," Barts says.

A Need for Action

Armbruster has one message for the legislators and Governor Rauner, "Birth to three years old is the most important window in a child's development. These children will never be birth to three again; please don't make them miss out on the services they need."

Like Armbruster, Dasher has a request as well, "Hear our stories in person, and see who you are affecting by not agreeing on a budget. While EI helps our children meet milestones, it also brings amazing and caring people into our children's worlds. With no budget, our children are also potentially losing some important people in their lives— their therapists."

Ceci and her Physical Therapist

I could not agree with her more.

The other night, I stood in front of a crowd and explained why we needed to end this budget impasse. Later in the evening, as I stood by the stage looking out at the audience, I noticed something that spoke to my heart: my own daughter, Ceci, who has been in EI since she was four months old. She wasn't right at my side, and she wasn't with her dad or her sister. She was in the arms of her amazing physical therapist. Not because she had to be there, but because that's where she wanted to be. In that moment, I was reminded of the incredible bonds and connections our children and therapists have because of EI. We must ensure that these bonds stay intact.  Our children should not have to suffer nor sacrifice due to political actions or inactions. But they are.

"Imagine these children as if they were your own children or grandchildren," Pederson pleads to Rauner and lawmakers, "More importantly, imagine if you had a child with special needs and you did not have a six-figure salary. What would you do?"


Each day that passes without a budget leads to more questions like Pederson's and less answers. How long will lawmakers make EI therapists wait to be compensated for the invaluable services they provide daily to children in our community? How long will families be forced to wait to get their children the services they so desperately need? How long are leaders willing to allow babies to suffer?

Why I Don't Believe Any of The Early Intervention Myths

"They're not looking for a handout. They're not looking for a freebee.  They're really looking for a helping hand.  They have ambition.  They're bright people.  And by the stroke of chance, they ended up with a need."  -- Ed Marchetti

In the last few months, I have traveled to the capitol, sent numerous e-mails to the governor, and placed countless calls to legislators.  Why?  My family has a need.  More specifically, my youngest daughter has special needs -- a gross motor and fine motor delay.  

She needs therapy.  And Early Intervention (EI) has been instrumental in ensuring that her needs are met.  Unfortunately, Governor Rauner is wanting to deny many children these important services.

I try to keep up-to-date with the Early Intervention cuts that Rauner is proposing.  I scour the web, skim through the paper, and occasionally check his Facebook page.

When I first read about his EI cuts, I remember thinking, "How can anyone justify taking funding away from children with special needs?!  More so, why would anyone support a man who wants to do such a thing?!"

But then I started reading the Facebook comments on Rauner's page.  And I realized two things: people are mean -- really, really mean -- and people are misinformed about the services provided by EI and about the people who utilize these services.

So, this is my response to the top "Rauner Facebook Comment Myths" I have read in the last few months:

Myth 1:  "You are all a bunch of takers, and you want a handout.  I shouldn't have to pay so you get things for free. I'm sick of paying for you people. You are just unhappy that the Gravy Train is gone." Or other less friendly variations.

My Response:    Yeah...no.  Not everyone who receives services from the state is a "taker" nor are they getting a "handout."  This comment seems like a HUGE generalization to me.  The term "handout" implies that I am receiving something for free.  I am not.  In reality, Early Intervention works with my insurance for the services that are provided to my child, and I also pay a monthly fee based on my household income.  

Is my monthly EI payment less than I would pay out of pocket after insurance?  Yes.  Without a doubt.  Would I be able to pay for all of my daughter's therapies out of pocket?  Maybe.  Hopefully.  

But if I couldn't afford for her to get help, she is going to cost taxpayers much more when she enters public school.  Her delays will be greater, and she will be in need of more services because she didn't receive the help she needed as a toddler.  

In fact, research argues that my daughter will be more likely to close developmental gaps because of EI and will be less likely to need special education services when she is school aged because of EI.  According to the Illinois Physical Therapy Association (IPTA), For every $1 dollar spent in early intervention services, $7 are saved in special education costs. More so, EI services are 2 1/2 times less costly than special education services.  

As for that Gravy Train, I have never ridden on it, but if anyone has FREE passes, let me know :)  Wink, Wink.  Seriously, I would TOTALLY pay for a ride on the Gravy Train.

Resources:  http://www.rand.org/pubs/research_briefs/RB9145.html

Myth 2:  "Stop complaining and get...an education, a college degree, a job, etc."

My Response:  Education...check.  College degree...check.  J-O-B...check.  My school completion, my college degree, and my ability to maintain a full time job does not mean I am less likely to end up with a need, although I wish it did.  Despite what we all want to believe, there are no guarantees in this life.  

So, now that we have covered that, let's move on to my complaining.  Sometimes, the squeaky wheel gets the grease.  I don't like the word "complaining."  I don't complain.  But I will speak out against something I do not agree with.  I will write about it.  I will fight for what I believe in.  For those who just don't "get it," go to the end of Act 1 of Les Mis -- General Lamarque ( a sympathizer to the lower class) has died, and the people are revolting.  Crank up your volume, and rock out to "The People's Song," and tell me you don't "get it" now. 

Side note --  maybe comparing this to the legacy of the French Revolution is slightly over-dramatic, but if the "The People's Song" can be used to oppose a McDonald's opening in Australia, than I feel it is fitting here.  And besides, some things -- like dictatorships, royal/political incompetence, and denying children with special needs services -- are worth speaking out about or "complaining" about or singing about.

Resources: https://www.youtube.com/watch?v=gMYNfQlf1H8

Myth 3:  "Shouldn't you be able to just do whatever the PT, OT, etc. does at home yourself?  Why should we have to pay for something you should be able to do?"

My Response:  Should I?  No.  Can you?  Probably not.  While I did graduate college (see above), I did not study the human body.  That's right.  I am readily admitting that I have little to no working knowledge in the areas of: kinesiology, cellular histology, biomechanics, and physiology -- just to name a few. While I wish I was able to help my child without any assistance, along with saving the world, unfortunately, I am unable to do so.  

Luckily, because of EI, I am able to receive help from the most qualified people -- our EI providers.  And the great thing about Early Intervention is that each of my child's providers teach me different strategies, games, and techniques that I can use at home to help her.  And the best part is that her PT and OT are always one text message or phone call away if I have a question or concern.

Resources: Come on over to my house if you have any doubts, and I will gladly share my 475394530 texts messages back and forth full of ideas for me to try.

Myth 4:  "You shouldn't have had a child if you can't afford him/her."

My Response:  Wouldn't it be great if the world worked that way?  If we only got what we could handle?   Unfortunately, sometimes life tests our faith, it tries our strength and it gives us more than we are prepared to deal with.  

Wouldn't it be even greater if we lived in a world where people willingly helped one another?   Where there was no need to question or belittle those who are in need of help the most?  Where a "helping hand" wasn't such a foreign concept?  

Resources:  Your heart is a good place to start...

We Aren't Going Anywhere

"If I could give you the best behaved kids and the most well-cared for kids, I would.  But these are the kids I have to give to you.  These are the kids you have to work with.  They aren't going anywhere."  Her voice was strong and hopeful, as she looked at the teachers sitting before her.

 And I knew, deep down, that each word she uttered was true.

My teaching career began in a setting far different from what I was accustomed to as child.  I never had to worry -- as some of my students did -- about where my next meal was coming from or if it was coming at all.  At the end of each school day, I knew I was going home to a house where there was electricity and running water and love.  I was blissfully unaware of violence and drugs and hate and prejudices.  My only concern, other than becoming the future Mrs. JTT, was to apply myself at school.

That is what is amazing about having our needs met: when we have what we need, we are suddenly free to focus ourselves, to apply ourselves, to challenge ourselves, and to eventually succeed.

But many of my students had experienced a world far different than my own.

I taught students who fell asleep on empty bellies at night, and who woke up not knowing where they would sleep the next night.   They came from broken homes -- a divorce, a prison sentence, a death.  I broke up fights and confiscated knives.  And I questioned why any child would act that way?  I saw apathy and disrespect and destruction. And I wondered why they didn't care?

That is what is unfortunate about not having our needs met:  we often lose our focus, our drive, our will to succeed.

"If I could give you the best behaved kids and the most well-cared for kids, I would.  But these are the kids I have to give to you.  These are the kids you have to work with.  They aren't going anywhere."  Her words were not an apology.  They were not a sign of displeasure nor defeat.  

This was a challenge.  A challenge to face reality with a sense of urgent optimism.  A challenge to -- despite the many obstacles -- not give up on the people who needed us the most.  

There was no room in her words for excuses.  No room to point fingers and blame potential failure on lack of funding or parenting or society.

We weren't going to let hunger or poverty or homelessness stop us.  We were not going to deny students the help they deserved because their needs were too great or their challenges too significant.

And we rose to the challenge.  And it worked.  And we all succeeded.  

On nights like tonight, when my Facebook newsfeed is inundated with headlines about Human Services cuts in Illinois,  I wish Governor Rauner could have sat in on that staff meeting -- a stack of half graded D.A.R.E essays in front of him, uncomfortably perched on a chair designed for a fifth grader's frame.  

I wish he could have heard her words as they danced in the air around us -- full of determination and hope. In that moment, I think he would have realized that "we are the people he has to work with." Our needs may be great and our challenges may be significant, but we aren't going anywhere.

Maybe, had he been there, had he seen the conviction in her eyes and listened to the sincerity of her words, he would have accepted her challenge to not give up on the people who need help the most.

And he would have rose to the challenge.  And it would have worked.  And for once, we all would have succeeded.

We Are Early Intervention Moms

We are strong women.

We are your neighbors, your sisters, your daughters, and your best friends.

We are the mothers of amazing, resilient, determined, and beautiful children.  Children with needs that may differ from those of your own children.

We know -- because of our children -- that anything is possible.

We have seen the positive effects of prayer and hope and hard work.

We believe in in the power of PT, OT, DT, and Speech services.

We have cried at diagnoses and celebrated inchstones.

We have felt the pain of isolation. And we have experienced the beauty of finding our "village."

We know all too well that sometimes what is worth having is undeniably worth fighting for.

We are the voices of the silenced, the unseen, and the ignored.

And that's why, we are fighting this battle -- not just for our own children, but for those children yet to come. We are fighting to ensure that all children will have access to the services they need in order to reach their full potential.  We are fighting for a better and brighter future.

We are Early Intervention Moms.

We are in this together.

And Governor Rauner, we don't give up.

We are strong women.

Learn more about what we are fighting for here:  https://www.facebook.com/ineedei

A Letter From Our Village

You may not know my name.  My face may not be recognizable to you in a crowd.  The only time we may have ever exchanged words was most likely a causal "hello" at the grocery store checkout line.  And that is why what I am about to say next may come as a shock.

You are my village.

Yes, YOU are my village.  You who only knows me from the school drop off line.  You who waves at me from your front porch as I take my girls on an evening walk.  You who never once asked to be a part of my village.

As random as it may be,  I need you.  My family needs you.  My youngest daughter needs you too.

If you are anything like me, you are busy...super busy.  There is not enough time in your day to do all of the many things you need to do.  There are children to care for, bills to pay, a job to go to, a house to tend to...the list is enormous.

And that's why I (almost) feel kinda, sorta guilty asking you for anything.

But I also know that if you are anything like me, you know that one of the most valuable investments we can make is in our children.  And you know that our children are our future.  That when we allow even one of them to get lost, we are allowing the brightest and most promising part of our future to be lost too.

You also know that it takes a village  -- to raise our children and to make a difference.

And that is why I am writing to you -- my village -- today.  I need your help.

Governor Rauner has proposed cutting 23M from the Early Intervention budget.  This means that children with a developmental delay of less than 50% will no longer be able to receive services. One of those children is my daughter, Ceci.  And since you are my village, she is your kiddo too.

Please take the time to write to your legislators and let them know that Early Intervention is the LAST place cuts should be made.  Because if these cuts are made, OUR village will be hurt.

Since your time is valuable, below is a letter you can use.

And as always, thank you -- for your time, your smiles, your waves, your support and for proving how powerful a village can be.

I am writing to urge you to reconsider your proposed cuts and policy changes to programs serving our state’s most vulnerable children and families. I firmly believe these cuts and policy changes are not cost-effective, and will, over time, result in increased spending in a number of areas.

I am most concerned about your proposal to significantly restrict eligibility for Early Intervention (EI) services for infants and toddlers with developmental delays by making it impossible for children with mild to moderate delays to access services. Increasing the percentage of delay required for eligibility from 30% to 50% will deny services to thousands of children and families in IL – eliminating more than half of the children from receiving services.

This change will not save money; rather, it will result in higher special education costs for these children in preschool, kindergarten and beyond as their delays become more severe without intervention. Studies show that children with mild and moderate delays receive the most benefit from Early Intervention and are more likely to close the developmental gap.

Restricting eligibility for EI services will undermine your commitment to early childhood education and make it more difficult for parents, pediatricians and early childhood professionals to find the critical supports that children with developmental delays need to have a healthy start.

If you aren't sure who your legislators are or how to contact them, use the following link:

http://www.elections.il.gov/DistrictLocator/DistrictOfficialSearchByAddress.aspx

A Letter to Governor Rauner -- Early Intervention

Governor Rauner,

You don't know me.  We have never met.  Our paths have never crossed -- until recently -- when I read about your "proposed" budget cuts to Early Intervention.  My heart sunk.   I couldn't catch my breath.  Tears streamed down my face.

And since we have never met, you can't possibly be aware that I am the mother of an amazing two year old, Ceci.  You don't know that she has a smile that can light up the room.  And a belly laugh that is unbelievably contagious.  You don't know that she loves puppies and ice cream and dance parties.  That she gives the best and the biggest hugs. Or that she is the strongest and most determined person I have ever met.

You also don't know that she has hypotonia and a gross motor delay.  That she recieves Physical Therapy services through Early Intervention.  That without these services, without our amazing physical therapist, we would be lost.  SHE would be lost.  And that fact terrifies me.

Early Intervention gives our family hope, support, and guidance.  Early Intervention gives my daughter a CHANCE:

A chance to walk and explore the world around her.

A chance to be included -- to run with her friends on the playground as their laughter      
dances around them.

A chance to do silly dances with her older sister and giggle until happy tears run down
both of their faces.

A chance to reach her potential, and in doing so, experience all the beauty life has to
offer!

And although we don't know eachother, I DO know some things:

I know that if you make cuts to this program, my daughter will no longer recieve the  services that have been so instrumental in helping her learn to crawl and walk and run and jump.

I know that without these valuable services, my daughter will slowly and surely fall further behind her peers.  And SHE has worked so hard to get where she is -- harder than you could ever begin to imagine. How dare you threaten to take that away.

I know that my daughter will not be the only child that will be affected -- hurt -- by these cuts.  There are many other "Cecis" out there -- children who need Early Intervention services and who deserve a chance.

I also know that there are other moms like me out there too -- moms who love their children with every fiber of their being and want the very best for them.

And let me tell you a funny thing about moms:  when you make one of us mad, you have ignited the fury of the masses.  And NOTHING is scarier than a bunch of pissed off moms.

Governor Rauner, in closing, I realize that I may have misspoke earlier.  Ceci may be determined, but I AM the most determined person I know.   I'm an avid letter writer, and I've got nothing but time.

If you make these "proposed" budget cuts to Early Intervention,  I can guarantee you that you will be hearing a lot more from "yours truly"... Ali Cummins.


Photo courtesy of ALH Photography