Families with autistic children turn to Eastern Michigan University for vital services as U-M center prepares to close
Occupational therapist Jenny Neuhalfen helps 4-year-old Max Glynn, who has autism, climb up a mat last week in the occupational therapy room at the Autism Collaborative Center at Eastern Michigan University.
Angela J. Cesere | AnnArbor.com
But its pending closure has already brought growth at the nonprofit EMU center, Lemerand, an occupational therapist and psychologist, said Friday.
Catherine Lord, the director of the U-M Autism and Communication Disorders Center, announced her departure last week in an interview with AnnArbor.com. She’ll be moving to New York to the Institute for Brain Development, a new joint effort of Columbia University Medical Center, Weill Cornell Medical College and New York-Presbyterian Hospital that's scheduled to open at the end of 2012.
U-M doesn’t not have plans to replace her and confirmed the autism center will close this fall.
Lord is world-renowned in the field of autism research: The Harvard-educated psychologist helped create diagnostic tools that have become the gold standard in the field, Lemerand said.
UMACC has been heavily referring patients to the EMU center for diagnostic assessments in the last month as offerings wind down, Lord and Lemerand said.
Lord called the EMU center, which opened in 2009, “a huge resource.”
While there are a variety of options for autism diagnosis and treatment at private centers and area hospitals in Washtenaw County, services are often not covered by insurance and can run into the thousands of dollars.
As at UMACC, the EMU center strives to offer services at a reduced price.
Diagnostic assessments at EMU cost $850 — elsewhere, the cost can run up to $5,000.
Speech therapist Andrea House holds a rope ladder Friday for 4-year-old Annabelle Michalek, who has autism, in the occupational therapy room at the Autism Collaborative Center.
Angela J. Cesere | AnnArbor.com
“I think the impact for us will be very positive. Critical mass can be really important to getting programs off the ground,” Lemerand said.
For example, a class for autistic children with speech, occupational and music therapists needs enough children enrolled to be cost effective because of the low price charged to clients’ families, Lemerand said.
Autism spectrum disorders affect 1 in every 110 children and 1 in every 70 boys, according to the U.S. Centers for Disease Control and Prevention. It’s estimated that 1 million to 1.5 million American adults and children live with an autism spectrum disorder, a condition marked by social, communication and behavioral challenges.
The center, which has a budget of about $600,000, is not yet breaking even. It’s funded via payments for services, and grants and partnerships with organizations like Easter Seals. Fundraising provides scholarships for autistic individuals and their families.
At UMACC, Lord was able to secure millions of dollars of funding and run research projects that offered free or reduced-cost services to families of autistic children.
Its staff of 60 people researches, evaluates and treats autism in individuals who range in age from infancy to adulthood. The center’s offices are in the Victor Vaughan Building, 1111 E. Catherine St. in Ann Arbor, while staff involved in ongoing studies work elsewhere on campus. At any time, UMACC provides services for 300 to 400 people, Lord said.
Nine staff members at the center and five or six faculty members from EMU collaborate to help clients, drawing from the disciplines of occupational, speech/language, music and recreation therapies; social work; psychology; nursing; and dietetics, Lemerand said. Thirty EMU students from those programs provide supervised services. Overall, about 100 families use the center. Its youngest client is 18 months old and its oldest is 48.
Lemerand acknowledges that EMU is not a top-tier research institution like U-M; it can’t secure individuals like Lord who can bring in giant federal grants for major projects at no cost to families.
But, the EMU center has the room, the staff and the desire to grow.
The EMU center takes less of a research-based, and more of a family-based approach to treating the condition at its center at 1055 Cornell Road in Ypsilanti in the Fletcher School building, Lemerand said.
“Autism affects the entire family — financially, emotionally and psychologically,” Lemerand said.
Social groups for autistic teenagers and adults teach social and independent living skills. Interventions with younger children attempt to influence the brain in its growth and development to help build skills, Lemerand said.
The EMU center draws from different disciplines to find the right path to help autistic individuals overcome obstacles with communication, behavior and socialization. Support groups for parents and family members of autistic individuals are free.
Juliana Keeping covers general assignment and health and the environment for AnnArbor.com. Reach her at julianakeeping@annarbor.com or 734-623-2528. Follow Juliana Keeping on Twitter
Comments
Wondering
Wed, May 18, 2011 : 8:23 p.m.
That UM is choosing to close UMACC rather than replace the director suggests that it may have made a decision to close the center for strategic reasons. Hopefully that means that UM is seeking a new direction for its autism programs. State of the art research in this area is translational--where questions researchers ask and how they interpret their findings are directly informed by issues of clinical practice, and methods of clinical practice are directly informed by research findings. Hopefully questions generated in this way would inform methods of clinical practice in more substantive ways than simply providing a faster test for assigning children to "bins"--a major focus of some research efforts at UMACC. Agreeing with "cette".......researchers often have the luxury of being able to ignore serious "real world" issues caused by neuro atypical functioning--and therefore often do not feel the need to balance helping those on the autism spectrum develop strong self-esteem with also helping them to understand how to cope with the issues they wrestle with and the consequences of those issues, when to seek appropriate assistance, and whom to trust when seeking assistance. This failure to deal with both sets of needs appropriately can create very unsafe situations both for those--particular adults--on the autism spectrum and also for their families.
Wondering
Sun, May 22, 2011 : 12:23 p.m.
Absolutely, I couldn't agree with you more about one institution not having a lock on anything. But, it is equally as important for those who engage in research to immerse themselves in clinical realities as it is for clinicians to immerse themselves in the research data. The importance of that two-way sharing of information, and the equal respect for both halves of that sharing, oftentimes gets lost. If the two-way sharing of information and equal respect for both halves does not occur, then researchers can be asking questions that are irrelevant to practice, or can be interpreting their research data in erroneous or misleading ways.
Meg
Fri, May 20, 2011 : 11:11 a.m.
And that is precisely what reading the literature is for. Making clinical decisions requires that you read what others are doing and synthesize that knowledge, in part because no study perfectly represents the client in front of you. It's not all about how the research is done; it's about how clinicians make that research work. And the beautiful thing about that is that anyone, anywhere, can use the same published data. It's not about any single institution.
Wondering
Thu, May 19, 2011 : 1:39 p.m.
Putting both together helps to minimize the researcher-clinician divide, but perhaps more importantly, also helps to avoid researchers making clinical pronouncements from their position of authority as researchers when they don't have the clinical background to understand the consequences for real clients and families of the statements they are making........
Wondering
Thu, May 19, 2011 : 1:29 p.m.
Perhaps because research totally disconnected from clinical realities tends to lead the whole field astray regarding methods and models grounded in clinical realities..... and because clinical work without the integrative efforts of research tends to get lost among all the details of each case and fails to find the common similarities across many cases and even across age groups and various types of social cognitive disruption..... when you put both together, both are more powerful than either alone.........
Meg
Thu, May 19, 2011 : 1 a.m.
I'm not clear on why U-M is expected to be all things to all people. I grew up in Seattle, where the University of Washington does excellent bench science and some translational work, but isn't expected to be the sole source of evidence-based care. That's the role clinicians fill. Do we not trust anyone to be able to provide evidence-based care except U-M? Why not let them do the basic research they do well, and let other providers focus on services?
Ann
Tue, May 17, 2011 : 6:48 p.m.
It is too bad this article didn't highlight all of the great Autism services offered to families around the Ann Arbor area. Families don't need to drive to Ypsilanti to great services for their children with Autism. This article reads like a paid advertisement for the ACC. They are not the only place for families, in fact a lot of their "collaborations" with other non-profits mean much of the work they are doing is done by other organizations with better staff and experience! Families should be better educated about the resources available. Good journalism involves doing some research about all the options and not just highlighting one.
Dr. Thomas Beckett
Fri, Jun 1, 2012 : 2:02 a.m.
Agree, Look around Ann ARbor
Terri
Wed, May 18, 2011 : 1:17 p.m.
What's what the "Families don't need to drive to Ypsilanti!" thing? At most, EMU is 20 minutes from the furthest part of Ann Arbor proper. If this were an actual city, 20 minutes wouldn't get you three miles down the road. EMU has great services through this center. OF COURSE they are in collaboration with other organizations--hence, the name. Why recreate the wheel? They know better--they're bringing it together under one roof and I'm JAZZED. We're loving it there and so are our kids (one with ASD, one NT).
Lovaduck
Mon, May 16, 2011 : 11:06 p.m.
Thank heaven, EMU to the rescue.
Huron74
Mon, May 16, 2011 : 8:04 p.m.
Dr. what's-her-name is "the center". UM doesn't fund this thing. When she leaves her grant money and fundraising efforts go with her. From what I've seen of the center (from my grandson being seen there) they basically gather data, write papers, and do research. A loss of prestige for UM perhaps but that's how the cooky crumbles when you're a big research university. All these guys want to go live in California or to the Ivy League and when/if they do their centers, institutes, etc. go with them. Just how it is.
GoBlue1984
Mon, May 16, 2011 : 3:18 p.m.
The Rick Snyder cuts just keep on coming... no funding for an Autism center -- gee, I wonder if Snyder has any Autistic kids? Guess now. CUT CUT CUT! I don't blame high ranking scientists, psychologists, researchers... really anyone in academia for wanting to leave Michigan. If I could, I'd get out now too.
jns131
Tue, May 17, 2011 : 2:12 p.m.
I agree. What does Snyder have to do with this? UM was the one funding this, not the state. Re read your facts.
Huron74
Mon, May 16, 2011 : 10:38 p.m.
Snyder derangement syndrome. Very common in AA. Anything bad whatever gets blamed on a man who's been governor exactly three months three weeks. Sheesh.
a2umichfan
Mon, May 16, 2011 : 5:56 p.m.
This has literally nothing to do with Rick Snyder. What a strange and baseless statement.
Terri
Mon, May 16, 2011 : 3:23 p.m.
I am no fan of Snyder, but I'm not clear about what he's doing that's causing this center to close. Clue me in?
Happy Puppy
Mon, May 16, 2011 : 1:33 p.m.
I don't understand why, when people retire UM shuts programs down. First the director of Camp CAEN left and that wonderful program is gone, now this. Can't someone else run these, haven't there been capable assistants throughout the years? This is riduculous that a major university can't keep these going.
say it plain
Mon, May 16, 2011 : 3:09 p.m.
Yep, the sometimes-unfortunate nature of the university-town beast. You get some fantastic programs that make Ann Arbor one of the best little cities in the Midwest in which to raise kids, for instance, or in which to do some other things as well, and then it can...poof!...disappear as the U transitions away from one thing and toward another, as it works to maintain its place in that great pantheon of "top-notch" universities. These programs sometimes become so central-seeming to the life of the U that when one disappears it feels like some kind of 'mean-spiritedness' on their part, when all it is is the "general" little academic games of musical chairs and marketing ideas. A lot of money can be moved via grants, at least 'a lot' in the terms of getting nice programs established, and sometimes in corporate-y academia these monies move around like execs among different boards of stockholders. Sometimes it looks like a program just has to leave the holdings portfolio...
Terri
Mon, May 16, 2011 : 2:06 p.m.
The fact is, Happy Puppy, there are scores of units that survive over time (the big one that leaps to mind is ISR). There are also scores of units that don't. It's the nature of the research institution--funding leaves, units fold. New faculty arrive, units open. EVERY "major university" has this happen. It is what it is--no more, no less.
cette
Mon, May 16, 2011 : 1:11 p.m.
Let's ask Bemused Passerby. Formally what plans does the U have have for ASD kids, other than dumping them on other entities in the area? It's welll known the American Academy of Pediatrics doesn't not support BCBA intervention I would love to hear the U's overarching plans to provide comprehensive standard of care for these children. I've been waiting for a long time now... "While it's always disappointing to see a developed program at the University discontinued, I think this is a critical opportunity for the University and the Health System to re-evaluate their role in both the study and care of these children and families. UMACC may have been a productive research program, but for the 1 in 110 kids and their families in the area, having the opportunity to participate in a study is not the same as having a clinical home at UM. EMU's program has stepped up to fill a tremendous void in autism services unfilled by UM, including diagnostic evaluation, multidisciplinary treatment, and truly helpful family and parent support services....... Plans should be made to engage the tremendous expertise already in place within the Ann Arbor Public Schools. Any plan would wisely include performance metrics beyond recovery of extramural grant dollars -- regardless of what drove UMACC's focus on research and it's limited clinical reach, the program simply was not serving the community in any substantive way. The talent and enthusiasm to make a multidisciplinary program succeed is already in place at the University --- here's hoping that the leadership of the medical school and health system leverage the folks that are already providing care for so many of these families, rather than anchoring the future of autism care at UM to the most recruitable external investigator. In the meantime, they'd be very wise to look to EMU's program."
cette
Mon, May 16, 2011 : 12:58 p.m.
Let's ask Bemused Passerby. Formally what plans does the U have have for ASD kids, other than dumping them on other entities in the area? It's welll known the American Academy of Pediatrics doesn't not support BCBA intervention I would love to hear the U's overarching plans to provide comprehensive standard of care for these children. I've been waiting for a long time now... "While it's always disappointing to see a developed program at the University discontinued, I think this is a critical opportunity for the University and the Health System to re-evaluate their role in both the study and care of these children and families. UMACC may have been a productive research program, but for the 1 in 110 kids and their families in the area, having the opportunity to participate in a study is not the same as having a clinical home at UM. EMU's program has stepped up to fill a tremendous void in autism services unfilled by UM, including diagnostic evaluation, multidisciplinary treatment, and truly helpful family and parent support services....... Plans should be made to engage the tremendous expertise already in place within the Ann Arbor Public Schools. Any plan would wisely include performance metrics beyond recovery of extramural grant dollars -- regardless of what drove UMACC's focus on research and it's limited clinical reach, the program simply was not serving the community in any substantive way. The talent and enthusiasm to make a multidisciplinary program succeed is already in place at the University --- here's hoping that the leadership of the medical school and health system leverage the folks that are already providing care for so many of these families, rather than anchoring the future of autism care at UM to the most recruitable external investigator. In the meantime, they'd be very wise to look to EMU's program."
say it plain
Mon, May 16, 2011 : 3:48 p.m.
@cette, I'm sorry you feel misled by the UM on their caring for children in behavioral and psych services...they often advertise in a big way how wonderful their 'resources' are here at the UM, even if those aren't truly fully under their institutional umbrella. It makes people confused about how the 'programs' they're engaged with are funded, and very often it is *not* officially with the hospital/clinical dept per se, but rather via various other UM departments. It sounds like this program of Professor Lord's was a huge resource where there had been a true dearth of services. Did UM health-services come to rely on it as a resource for the community? Creating a real pipeline to its 'reseach and teaching ' programs from its healthcare affiliates in the area? Maybe. But not only is this the unfortunate nature of the top-notch University beast, it's also true that sometimes the other 'resources' in the area can be at least as 'good' in its total patient-service, if you know what I mean.
Terri
Mon, May 16, 2011 : 2:22 p.m.
cette: Who "guided you mistakenly with negative outcomes"? What does that mean?
Meg
Mon, May 16, 2011 : 2:21 p.m.
cette, this isn't about your perception of best treatment; it's about a program that closed for reasons that have nothing to do with you. In autism therapies/supports, there are a variety of approaches, none of which is clearly superior for all kids. The evidence base isn't there. If you don't like the services offered at one place, go somewhere else. There isn't a requirement that all services offered everywhere be comprehensive, nor that they be to your liking. That's not how health care works.
cette
Mon, May 16, 2011 : 2:16 p.m.
Terri, when people guide you mistakenly with negative outcome, it's personal.
Terri
Mon, May 16, 2011 : 2:04 p.m.
cette, UMACC isn't part of the hospital.
jns131
Mon, May 16, 2011 : 1:58 p.m.
I just read an article that Virgina does carry medical insurance state wide for parents with autism. They focused in on one family who had to make the move because they found it does work. I am in complete agreement that medicare needs to cover autistic children and the federal government needs to keep places like this open.
cette
Mon, May 16, 2011 : 1:51 p.m.
Because they are a hospital, because parents bring their children there for diagnosis and for treatment, and because they should be told of standard of care treatment, whether it's cheap or expensive, or whether it is covered by insurance or not. If the U doesn't know what to tell us, it loses it's signature, it's claim to be the leader and the best.
Terri
Mon, May 16, 2011 : 1:37 p.m.
cette, why does U-M have an obligation to kids for whom it was offering services as part of a research program that no longer exists? Don't get me wrong--I have a son who was in one of the social skills groups and he got a lot out of it, but just like any research done at the University, when the expert leaves or the funding dries up, the people participating in that research stop being served. I think it's wise not to take things personally that aren't personal.
Evergreen
Mon, May 16, 2011 : 12:46 p.m.
Lloyd Carr and MI football players raise millions for Motts Children's Hospital, for children. Why aren't the increasing numbers of autistic kids under the umbrella of Motts Children? First they are children, THEN they are autistic. My autistic daughter in now 30 years old. She just ran her 115th 5K or longer race, and that is not counting races during 4 years she lettered in track and cross county, or many years of running at Special Olympics. But her intervention was late, and she could have beaten even more obstacles with early intervention! This is a fact. Pay me now, or pay me later. These kids want to work, they want to have friends they can interact with, and they do not want to be subsidized for years by our taxes instead. The State Chamber of Commerce, in my opinion, couldn't find their head or their heart right in front of them, and I've been a proud member of a LOCAL Chamber for years.
81wolverine
Mon, May 16, 2011 : 7:28 p.m.
That's a very good point about Motts. It seems with their fundraising clout, the autism center could find a home there. It's good that your daughter is still making progress though. That's good news to me as my 23 year-old has Asperger's syndrome, and after many tough years is starting to finally get over some of the obstacles that have been holding her back. Definitely yes, earlier intervention could have made a difference with her too.
eagleman
Mon, May 16, 2011 : 3:32 p.m.
Probably because Mott is already has its hands full dealing with childhood diseases. Mott is there to save kids who suffer life-threatening illnesses, not developmental disorders. I don't see how the two are related anyway. One deals with physical health issues, the other with mental health. At the U the psych unit is segregated from the rest of the hospital because the issues they deal with are altogether different then what Main, CGC, and CVC deal with.
81wolverine
Mon, May 16, 2011 : 12:16 p.m.
The closure of the U-M center is a real loss for the community. It begs the question though as to why U-M is not trying to keep it going by hiring a new director. With a staff of 60 and the obvious demand for services, why not keep it going? Perhaps they didn't think a new director could be nearly as effective at getting the necessary funding. I'd be interested to hear other perspectives on this.
jns131
Mon, May 16, 2011 : 1:49 p.m.
I was thinking the same thing. Why close it? Why not hire a new director? Or is this another way for UM to divert its funding and again, children suffer? Very heart breaking to hear this but EMU is going to be totally overwhelmed as well. Good luck to those who just went on the unemployment line.
peg dash fab
Mon, May 16, 2011 : 12:37 p.m.
It does not beg the question, it raises or suggests the question. (Begging the question is a form of logical fallacy in which the conclusion presumes the antecedent, e.g., I believe the Bible because it is the word of God.)
cette
Mon, May 16, 2011 : 11:57 a.m.
Well, I beg to differ, it is the gold standard, and the higher functioning children can benefit from competent ABA. Maybe your son when he is older will wish someone had taken off the spectrum and let him live a neurotypical life. Maybe you will too. If he still young, you don't know how hard it can be for him, and much less difficult less difficult it could have been.
thehawk
Mon, May 16, 2011 : 4:11 p.m.
@Meg: I'm with you as well. I have 10 and 11 year old Aspies.
say it plain
Mon, May 16, 2011 : 2:56 p.m.
That was very nicely said, @Meg.
Meg
Mon, May 16, 2011 : 1:04 p.m.
He's nine. He has friends, he's mainstreamed in school and he's happy. We don't ignore his autism or try to make him more like us; we give home tools to function in a world that often wishes kids like him could magically become "normal". Why should I spend my son's childhood telling him that his worth depends on how well he changes such a core part of his being? My son thinks differently from me. He relates to the world differently. That doesn't make him wrong, any more than lefties are wrong.
Meg
Mon, May 16, 2011 : 11:34 a.m.
Yes, we need insurance coverage. But not all families or children benefit from intensive early intervention, and it's not the only choice for services. As far as it being the "gold standard for treatment", well, my kid doesn't have a disease and doesn't need to be treated. What he has is a neurological difference, and ACC does an excellent job of helping him learn how to be a person with Asperger's who can still function in an NT world.
cette
Mon, May 16, 2011 : 11:25 a.m.
ACC may be good, but they do not do Early Intensive Behavioral Intervention, the gold standard of autism intervention. We have the Michigan Chamber of Commerce to thank for that, since they ran a very effective campaign last year to derail autism insurance reform. It costly to treat ASD kids, and even it's even costlier to not. Kudos to the ACC, but we more, much more to help these kids and their families. We need effective legislation and good public health policy.
Terri
Mon, May 16, 2011 : 1:45 p.m.
I'm interested in the citation you have that claims Early Intensive Behavioral Intervention as "the gold standard of autism intervention." My son is on the spectrum--he has Asperger Syndrome--and like MANY kids with an ASD, he wasn't diagnosed early enough for your "gold standard" to be applied to him, much less make any difference for him. Many kids with Asperger's aren't diagnosed until they start school (even later than our son), by which point they've totally blown past the window in which that intervention is even nominally effective. Now, our son is receiving services through ACC, as well as through U-M. ACC does a fantastic job of serving kids who are older--and IMO it's those kids who typically fall through the cracks. He's learning social skills and, later, he'll be in their programs that teach life skills to older children and young adults. I don't think that "intervention" is what I want for our kid. What I want is for him to figure out a way to be his intelligent, funny, flappy self in a world that expects him to fit into its neurotypicalness. I don't want him to change, I want him to figure out how to thrive in a world that hasn't learned to appreciate him.