In Delaware, some of the most severely complex special needs students with disabilities are being shuffled out of Delaware. This is a tragedy on several levels. Elizabeth Scheinberg, in her excellent Children & Educators First blog, explains it better than I ever could. I saw her first post a couple weeks ago, and found it to be very disturbing on many levels. We can bail out casinos for $9.9 million dollars, but we can’t take care of our disabled children that need to be with their families the most? Legislators said the casinos are too big to fail. I say the children of Delaware are too important to fail.
Delaware needs to find a way to bring good psychiatrists and psychologists to this state. The services south of the canal are few and far between. If you want good services, you have to go to Wilmington, which is not the greatest in the country. To get excellent services, you have to go out of state. I have heard of famiies bringing their child to a psychologist, or “behavior therapist”, and before they even talk to the child, they say nothing is wrong with them. This needs to be a wakeup call for everyone in Delaware. To rip any child away from their family in this fashion should be illegal. Delaware’s legislators should seriously make this a campaign issue.
I’ve been doing research on the history of disabled children in America recently, and upon reading this it feels like Delaware is going back 70 years in special education on this matter. There is a lot of money that is wasted in this state. A lot. But when disabled children can’t be with their family because we lack the capacity to deal with their medical needs, there is something horrifyingly wrong with this picture.
From Elizabeth Scheinberg’s post on Children & Educators First: http://elizabethscheinberg.blogspot.com/2014/07/delawares-institutionalized.html?showComment=1405201093924
From her story a year ago on the same subject: http://elizabethscheinberg.blogspot.com/2013/07/delawares-14-million-question-why-does.html
The complete 2013 ICT Report: http://www.doe.k12.de.us/infosuites/students_family/specialed/NEW/FinalICTAnnualReportFY13.pdf
My gut take on this, which you can also see in my comments on the other posts, is that I would bet my bottom dollar some of this could have been prevented had schools given proper accommodations and parental training (which is legal under IDEA law). These are our children Governor Markell. Is a casino more important than them? Once again, the race to the top is littered with special needs children at the bottom. Is it any wonder we need federal intervention for special education? Maybe it’s time to call the President.
UPDATED 7/13/14, 9:01 PM: The comments on Kilroy’s Delaware have become very emotional. I stand by what I have said the whole time on this. Here’s a copy:
Jon’s loving father, on July 12, 2014 at 5:31 pm said:
I actually saw this a couple weeks ago and was going to do an updated article on it. Guess I’ll have to wait til the 13-14 figures come out! Sounds like we are looking for the same stuff…lol!
(I didn’t realize at the time Elizabeth Scheinberg already did an update on the original article from last year)
John Young, on July 12, 2014 at 5:47 pm said:
Reblogged this on Transparent Christina.
Jon’s loving father, on July 12, 2014 at 5:52 pm said:
I just commented on her blog as well, but I will say the same thing here. Ten to one the schools aren’t accommodating these kids the way they should, and blaming the parents. The parents are probably resisting the schools, and this is the result. It’s like it’s the 15th century all over again.
Joanne Christian, on July 13, 2014 at 3:33 am said:
Sorry, but this bleeding heart has been cauterized in regards to the high drama that has been misrepresented in the tenor of this report out.
Having been familiar with some of those out-of-state placements, I can assure you those families took a deep breath and were RELIEVED the panel decided the best placement could not be found within the boundaries of our state, and identified an appropriate facility elsewhere.
Your incindiary description of these difficult placements, misleads the reader into imagining children ripped from their mother’s bosom, as the other children witness an empty chair at dinner, and their mother’s woeful sobs into the night of her baby–her baby, sent to North Carolina…….
Thirty two children in the entire state are sent out of state for much needed, individualized, intensive services, and you want to demonize the people for offering that choice and access? You want to blow up the system, because the most difficult, challenging, fragile, vulnerable and neediest children can’t just show up at their local 7-11–er I mean school–and expect Baked Alaska, when we all know Slurpees and a variety of Tastykakes is the menu or program capacity?
Healthcare and education of a child are the two most manipulated public service agencies working towards continuing favorable outcomes for a child. Why is it, a parent will take a riverboat, camel ride, and New York taxi to get their child to a specialized hospital, full well knowing, the care, equipment, talent, and expertise needed must be delivered in areas drawing critical mass, so that funding remains efficient, and available MORE handily in order to deliver care to MORE children? It’s an economic reality, obviously misunderstood by those who begrudge the inconvenience of where a child is being offered the very best in educational services, and the child is the very mirror counterpart of that severely, compromised medical child?
And the mournful, “meaningful loss of time under one roof, support systems, and reunification” ? Reality check coming your way…..
How well do you think those dynamics were in play, prior to the offer of a distant placement? One of the most driven, caring, hard-working, loving ladies I ever met in my long career–confided in me, her placement hearing in regards to a severely physical and mentally handicapped son resulted in her just laying her cards on the table….”I will do whatever, is in the best interest of my son,as you have decided to meet his needs. I am prepared to continue in this role. However, whichever way you decide, I will be 100% mother to him–but his age now, and the evolving demands of his care, in the best interest of my other 3 children, I am or will request foster care placement for them, because there is no other mother to tend to them once my entire focus and energy is rightfully priortized to their very needy brother. (BTW husband bailed by the time child hit 6).
Your critical expose’ of a RARE assignment to a distance placement, is unfair without disclosure of case findings that would deem that placement merciless, cruel, and reprehensible. The work the ICT is tasked with overseeing is heart-wrenching enough, without the added undeserved attention of being made to feel like Herods, instead of the Solomons they are compassionately trying to stand beside.
THIRTY TWO children out of state. No doubt every one of them given a better, more comprehensive chance at progressing to a greater degree, than remaining within our 3 little counties. Many of those with multi-faceted, heavy, complex overlays of mental, physical, and developmental struggles that have usurped any sense of normalcy in a family. And that means THIRTY TWO families AGREED, it’s best to go–and take this opportunity–for EVERYONE. Because, by law, those THIRTY TWO families could absolutely decline the placement.
Sorry, but I see the ICT as angels in these families’ lives, and not so much the adversary that has been planted.
kilroysdelaware, on July 13, 2014 at 6:16 am said:
Joanne, at the end of the day the question is, why does Delaware / DE DOE lack the resources to serve all students of such need within Delaware’s borders?
Millions are wasted on Markell’s self-serving ed reform agenda that could better serve these children in needs instate.
But yes parents often make hard decision for the interest of their children and surely all wish there were another way like instate.
John Young, on July 13, 2014 at 8:10 am said:
Is it possible that those 32 would have preferred the same out of home placement in-state? ICT is a political body, just like all boards. They are not angels, just as they are not devils.
elizabeth, on July 13, 2014 at 9:44 am said:
First and foremost, I ran this post, almost word for word a year ago. I’m sad that you didn’t engage until the annual update of our system failure.
“Thirty two children in the entire state are sent out of state for much needed, individualized, intensive services, and you want to demonize the people for offering that choice and access?”
No, Joanne, I was very clear – I don’t argue the need. I argue Delaware’s lack of capacity to serve these children in Delaware.
“You want to blow up the system, because the most difficult, challenging, fragile, vulnerable and neediest children can’t just show up at their local 7-11–er I mean school–and expect Baked Alaska, when we all know Slurpees and a variety of Tastykakes is the menu or program capacity?”
That’s really disrespectful. Did you know that until four years ago, we were sending children to Judge Rotenberg where they were candidates for electroshock therapy? Archaic? Only since 2010 when a lawsuit eliminated the practice.
I agree with you – these children need private residential placement. But, this placement should be happening here in Delaware. Read the ICT report and I can tell you haven’t as the team acknowledges it is being used and abused and that its hands are tied by the code that created it.
“How well do you think those dynamics were in play, prior to the offer of a distant placement?”
They weren’t. But, they shouldn’t be off the table simply because a child needs a residential placement that isn’t available in Delaware.
“Your critical expose’ of a RARE assignment to a distance placement, is unfair without disclosure of case findings that would deem that placement merciless, cruel, and reprehensible.”
It was an expose a year ago. It’s annual update to a Delaware Solution now. And Read the report. You know as well as I do that no lay person will ever see the case findings. But, we can imagine how horrible they are, an emotional tangled mess, heart-wrenching to the core. I can more than imagine them, I know some families, too. I’ve witnessed the effects of placement out of state.
“Sorry, but I see the ICT as angels in these families’ lives, and not so much the adversary that has been planted.”
You’re right, given that Delaware doesn’t deem providing instate services and placement to these children as valuable, ICT is an angel for these families. No argument there.
But, it doesn’t exclude this state or that system from critical review. We need to attract talent and services to Delaware. And we need it, yesterday. The trend data shows that the need for ICT intervention is rising and quickly.
You know what, just read the report. Until this post, few had read it, few new it existed, even fewer cared. And if the you find destroying family units sensational, it did its job either way – some people are finally interested in reading the report. And that is always the goal.
Pencadermom, on July 13, 2014 at 12:57 pm said:
So what is the reason for sending to various states? Is it because there isn’t enough room in the Bear facility or because some children need more specific individualized care that isn’t available in Bear or anywhere else nearby? I would think the parents would want the very best program for their child, no matter where it is. Are the families for or against this? Obviously they would want their child as close as possible but how could that always be possible? I am thinking about people I know who have gone to hospitals far away, and drug rehab. far away, because that was where they found the best resources and help for their specific needs. Wouldn’t this be similar? Are the parents being asked to pay for this?
Jon’s loving father, on July 13, 2014 at 8:38 pm said:
Joanne, I’m sorry if you were so offended by Elizabeth’s article. Both Kilroy and I jumped on it, because it shows how ineffective special education has been in this state. I’ve seen firsthand how a school can treat a child. And I firmly believe that had my wife and I not intervened so strongly when we did, my son would one day be heading to one of these types of facilities.
I’m not saying all behavior can disappear over night with a child that has disabilities. But they can be taught different ways to deal with them. Positive behavior reinforcements are not used to the degree they should be in many of our schools. Zero tolerance holds a higher importance to many teachers instead of dealing with behavior effectively. No school is perfect, but schools have just as much growing up to do as children in my opinion. I think teachers have one of the toughest jobs in the world, and they are underpaid, and under appreciated. But they also have a solemn responsibility to teach our children. And teaching isn’t just common core and curriculum. It’s also teaching them how to be productive AND caring members of society. Some will say that’s a parents job, and it is. But I think it is also teacher’s responsibility as well. They are with our children more of their young life than their parents in some situations.
Do I believe schools can do more with education? Absolutely. Do I believe the DOE can do much more than they have to help the schools with special education? Absolutely. But I blame the governor the most for not allocating funding so Delaware can bring more psychiatric services to our state. It’s not a matter of “big cities get all the funding”. It’s a matter of doing the right thing for the people of your state. The fact these parents are thrilled their children are being sent away from their state to get good services speaks volumes in itself. The fact the government does nothing, in what, 6-7 years there has been an ICT, to improve and attract these types of services to our state is sickening.
Give me a break, on July 13, 2014 at 12:22 pm said:
More importantly is that there are more than 32 kids needing intense service and because it’s expensive districts fight tooth and nail to keep those kid in house and under serve them dramatically! Meanwhile jeopardizing service and safety to the rest of the student body.
So there you have it folks. I think Governor Markell should come out with a statement on this. What do you say Delaware News Journal, Delaware State News, Dover Post, and the rest. Who wants to call the governor tomorrow to get a statement on this?
UPDATED 7/15/14, 11:35am, with more of the comments section from Kilroy’s Delaware:
elizabeth, on July 14, 2014 at 9:40 am said:
PM – the problem is that Delaware lacks the capacity to serve its own. No, the parents do not pay for it. The tax payers do – sending our tax dollars to other state’s private facilities. These are private placements – not facilities affiliated with hospital systems or public education. Our children represent a profit to be had for these providers. And we’re spending roughly $17 million on this system – 3 million more than the previous year.
The problem with the system is that Delaware has failed to attract service providers. Meanwhile over a 2 year period we spent roughly $31 million. We are looking at black hole – the need is rising, the trend data supports this, but we are not looking for more efficient ways to provide the services needed – such as developing capacity in-state.
The other problem is that once these children are placed residentially – not day program – the odds of reunification in the home environment become nil. Unlike drug rehab, these placements are not temporary.
Yes, families tend to be grateful for the placement. They are at wits end caring for a child that needs more than they can give – more than this state offers. The permancy of the predicament often sets in after they’ve had time to recover from the crisis. And by then it’s too late.
That’s just plain wrong. We shouldn’t be shipping our children off to other states. We should be developing capacity here at home.
Pencadermom, on July 14, 2014 at 10:36 am said:
Really? I did not know that statistically they don’t return home. Is this a school issue or medical?
Pencadermom, on July 14, 2014 at 10:39 am said:
From some of the stories I’ve read on here and heard, the lines between medical and education overlap quite a bit. Is there no limit of what we expect of teachers inside a classroom, especially when they have such a large number of students already? Where do we draw the line so they can be effective?
elizabeth, on July 14, 2014 at 2:52 pm said:
PM – For this subset of children, it’s frequently a both issue. The purpose of the ICT is to provide a collaborative interagency approach to service delivery for children and youth with disabilities who present educational needs that cannot be addressed through the existing resources of a single agency. 9 different agencies are represented on this team.
However, the report states that frequently the educational placement can be attained in Delaware, it’s the residential component that can’t be.
And, yes, many/most of the residential students are lifers. They go in and the only way out is through aging out. Twenty of the 2013 students in residential placement are 18-21.
From the report: Students exit Unique Alternative services
for multiple reasons that include: the level of service is
no longer required, families move out of state, students withdraw from the education system, or students age out at the conclusion of the school year in which they reach 21 years of age.
In 2013, 4 aged out, these students went on to enter the adult system for care and support. Three graduated, seven were cured, one moved out of state, two transferred to treatment centers, one was adjudicated to an out-of-state placement, and one was incarcerated.
In 2012, there were 22 students ages 18 to 21. 3 aged out, one withdrew and one student was cured and returned to the district. But, remember, these numbers, for both years, represent children in both day and residential programs. We are not given enough data in the reports to discern one population from another.
elizabeth, on July 14, 2014 at 2:53 pm said:
Oh, PM, I know where to draw the line. I don’t dispute the need for these placements. I am driving the conversation about where these children should be served. We need to invest in Delaware, first and foremost.
Joanne Christian, on July 13, 2014 at 11:47 pm said:
John, Elizabeth, and JLF,
To Elizabeth and John first–you KNOW I would want these very necessary services for children, but am more defensive that it ends up being conveyed as certain children, more or less, are boarding an orphan train to stops that can manage them. Also, (and to you JLF), I realize my writing syntax can sometimes backread as harsh or unyielding–it really comes out in me, when all the problems in our current education model get revisited or ressurrected, with the spotlight sometimes being placed on the wrong culprit. I sincerely feel this is one of those times. But before I go on…..I have to know we can still all carpool together to Dover and eat Girl Scout cookies?
Jack, on July 14, 2014 at 5:58 pm said:
By the number it’s apparent these children have great needs.
Question 1–How are these children provided care before going put of state.
Question 2–when does ICT enter the picture?
Question 3–what do we need to do to keep these children in Delaware?
elizabeth, on July 15, 2014 at 8:51 am said:
Jack, here are your answers:
1. These children are being cared for in their parents/guardians homes through a piecemeal approach to services. Frequently, the services that these families need simply to not exist. Families live in crisis mode for months and sometimes years before ever option can be expired and their child’s case can be brought before the ICT.
2. ICT enters the picture when it can be proven that everything we have in our state has been thrown at them and they’ve failed.
3.To keep these children in Delaware, we need to develop or attract private placement providers. We need a residential facility that is equipped to handle the most severe of our children. Remember, some of these children could still be served educationally. It is their emotional, mental, and behavioral health when combined with a neurological disability that we lack the ability to treat effectively.
Joanne Christian, on July 14, 2014 at 11:44 pm said:
OK, back to discuss. These 32 students are of some of the greatest needs across all sprectrums–or singularily represent a major sensory deficit (e.g. deaf) that AGREED upon WITH THE PARENTS is better served outside our 3 counties, and 30 by 100 mile state boundaries. It is a collaborative placement. I am willing to wager, we have sent 32 out of state, and no doubt there are another 32 who wish/pray/hope/beg the panel would decide such intensive care for their child, as to deliver a respite for the caregivers. It’s uncomfortable I know to admit, but it is true–and we need to step it up as to resource availability to these dire situations.
My point being about “out of state”–if you were living in Hemet, California and their team decided the best placement for your child was up in Oakland–it wouldn’t be “out of state”–but meanwhile 450 miles up or down the road here in Delaware, puts you in where? South Carolina or Vermont?
“Out of state” should only convey a limited available resource, primarily due to limited occurrence, not generating the critical mass necessary to populate and staff these highly specialized facilities. The whole distance and travel piece for some children IS going to be prohibitive of any regular visitation, all of which is taken into consideration of the placement. And remember, bottom line is….parents/guardians AGREE to that placement. Many placements leaving Delaware are within a 3 hour range. Visitation travel is often provided, but quite truthfully, many of these kids are so fragile, it is not part of the plan on the student’s end. Others–have come home every weekend. Each and every case is so decidedly different, and customized to the needs, and best practices and interest for the child–at a HUGE pricetag too–it just frosts me, that the decision makers (which includes parent/guardians too, remember) are somewhat dismissed as bureaucratic dog-catchers. It’s an ugly position to be in, but we also can’t have pop-up in-patient ILCs, and expect to be top of our game if demand and resource are not aligned.
And FWIW–it gave me great pleasure to meet a young woman back in the early 1980s in Rancho Mirage, California. She hunted me down, in my office, having heard that the new hire (me) was from Delaware.
She shared with me, that DELAWARE was her placement, sent from California, having saved her life, continued her schooling, rehab., etc..and just “lit up” of what the place still meant to her, and how grateful she and her parents were to have been sent there. She had hoped someday she could return for a visit……So, believe it or not–sometimes, our little state might just be the right placement for somebody else. Oh….18 months here, and I think it was twice her parents were flown in for a visit. She could not travel–was all air ambulance for arrival etc..
elizabeth, on July 15, 2014 at 9:05 am said:
Joanne, I am going to continue to disagree on this issue – we need to attract capacity to serve these children in our state.
You state ” no doubt there are another 32 who wish/pray/hope/beg the panel would decide such intensive care for their child.”
And you’ve proven my point. It’s not 32, it’s 64, 128, etc. The need is rising, ICT is the Gate Keeper. These 32 represent the cases that have actually made it to ICT. How many more are desperate for relief but stuck in a pipeline?
So why not develop a world class facility or network of facilities to serve these children? Aren’t we racing to the top? Do you have any idea how difficult it is to open a nursing home in Delaware? If we had the same stringent practices in place for our children that we purport for our elderly, we could control the quality of the resources we attract.
A couple years ago, I reconnected with an old friend. She had come to delaware for her son about the time mine was diagnosed. Though we had grown apart as our journeys took us different directions over the years, we happened to find each other at the same meeting years later. She confided in my just how hard her life had been here, how services were non-existent given the severity of her child’s disability, how she had prayed for years for his case to go before ICT and how relieved she had been when he was finally residentially placed.
Her greatest regret – she had agreed to the placement b/c she was desperate, even though it was three hours away and she had no personal transportation. She hadn’t seen her child since he was transported to his new home. She knew he was never coming back.
Imagine that happening 64 times over this year? and next? and the year after?
ICT is not the problem, the solution needs fixing.
Jon’s loving father, on July 15, 2014 at 9:25 am said:
Joanne, you keep stressing that the parents agree. This is the most likely scenario.
ICT: “We don’t have any more capacity in Delaware to serve your son”
Parent: “So Johnny can’t get help?” (crying inconsolably)
ICT: “Actually, we do have a place we contract with. It’s in Pennsylvania, not far from the border.”
Parent: “But I live in Harrington, that’s over an hour and a half away.”
ICT: “It’s really the best we can do. If a spot opens up in DE we will let you know.”
Parent: “What happens if we don’t do this?”
ICT: “Johnny came to this panel because of the fights, at home and at school. Left unchecked, he will be expelled. We know Johnny’s disability has become something any parent wouldn’t be able to handle. He needs help, and this is what we are able to offer at this time.”
Parent: “But it’s so far away, what if he needs me? He isn’t always like this.”
ICT: “We understand. But you can visit anytime you want. And we will pay for transportation. This is really what’s best for Johnny. He needs help, and we want to get him the very best care that’s out there for him right now.”
Parent: “I guess I don’t have much of a choice. Will it be permanent?”
ICT: “We don’t think so. We believe, with proper care, counseling and treatment, Johnny will be back in public school in a matter of time.”
In this scenario, the parent’s options are very limited. It’s a matter of choosing between horrible choices. I wouldn’t say all parents agree in a situation like this. It’s like any choice made between bad options while also in a very emotional vulnerable state. Never a good environment for this scenario.
elizabeth, on July 15, 2014 at 10:34 am said:
OMG – that’s pretty much the way the conversation has been summerized to me by a couple different families. Take a look at Lou – he’s DOE’s fictionalized character – a profile of ICT users –
If Lou was your kid and these were the options presented to you, what would you say?
Jon’s loving father, on July 15, 2014 at 11:29 am said:
I was guessing, but under the guise of what I have read in these reports (all of them that are available on the DOE website), and what I know of special education in Delaware. I am of the firm belief that many of these situations could have been prevented years earlier. Child Find in Delaware is horrible, especially at the charter school level. Just look at the school profiles and see how many charters have NO complex level students. 9 of them! Talk about charter school enrollment preference! Lou was my son a couple years ago. But guess what, he wasn’t getting the special education he needed and his behavior was a direct result of the school’s ignorance. Once he received those services (at a different school), his behavior completely changed for the better and he did better at school. Granted, he is not a complex student, but the way the system was at his previous school, he could have been eventually. Thank God we made the right choice and got him the hell out of there.
The conversation about this issue continues, and I have read through these reports. There are some shocking statistics, especially once need based funding was introduced in 2010. I will be doing an article on this that will come out in the next few days, unless Kilroy or Elizabeth beat me to the punch!