Circle of Care

EHM talks to Margaret Bauman, MGH, founder of LADDERS, about the unusual facility that uses a multidisciplinary approach to treat children with developmental disabilities on the autistic spectrum.

“There needs to be really good medical healthcare for kids on the autism spectrum, which they frankly aren’t getting in many parts of this country”
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The Learning and Developmental Disabilities Evaluation program – known as LADDERS – is nothing if not unique. It encompasses a multidisciplinary center designed to evaluate and treat children, adolescents and adults with a handicapping developmentally related conditions. Affiliated with MassGeneral Hospital for Children in Boston, the program provides expertise in neurology, developmental pediatrics, gastroenterology and psychiatry/psych-pharmacology. but it’s LADDERS’ commitment to a multidisciplinary approach that makes the program stand out from its nearest equivalents.

LADDERS’ founder, Margaret Bauman, didn’t set out to create a unique facility, but as she explains, it was a case of necessity being the mother of invention: “I’d love to tell you that I set out life and planned to do this,” she says, “but what happened was that part of my training as a neurologist was to spend some time in the University Affiliated Programs, which were government-funded multidisciplinary teams designed to evaluate individuals mental institutions or the institutions for the retarded that were closing down.

“This was how I was trained in the model of having a group of people sit around a table discussing a single patient, and I realized that part of my medical training had been lacking in the sense that I really didn’t know what a speech and language pathologist did, or how they evaluated a patient, or what their findings meant, or an occupational therapist, or a psychologist, or an audiologist, or any of those other people, so it was an unusually rich learning experience for me to have this kind of team approach.
   
“Then in the early 1980s, I was working in Cambridge at the Cambridge Hospital, which is a Harvard teaching hospital, and down the street from us was a geriatric hospital. They called one day to say that they needed somebody to monitor their pediatric program, which I did, but then I got bored due to my attention deficit disorder. I convinced them that they needed to expand their reach, and if they were working with young children with developmental disabilities to notify pediatricians in the community, and we started seeing more kids.”

Bauman explains that this carried on until the early 1990s, when the program she was running came under scrutiny – it was not a money-maker because of the amount of time that went into dealing with each patient. She was told she would have to change the treatment model: “I said, ‘No, I didn’t want to change the model,’ because I really thought it was – you know, this interdisciplinary approach was really important, and so they insisted that this had to be done for financial reasons.”

Eventually, after various other ups and downs, in 2000 it was agreed that Mass General would combine with Spaulding Rehabilitation Hospital, which was its sister hospital across the street, and that those two facilities would put provide backing to the LADDERS program.

“That’s how it evolved,” Bauman concludes. “It’s not that we sat down and said, ‘Let’s put together a program.’ It evolved because the kids that we needed to see are complicated and we needed to draw in a number of disciplines to see them. Then we’d get more and more people involved over time and they gradually become a team, and that’s what we have at the moment.”

One of a kind
In spite of – or perhaps because of – all of its ups and downs, LADDERS remains a unique facility. Bauman says she doesn’t know of any other program like it, even those that charge a fee for service. “There are autism clinics around the country, of course,” she continues. “Some of them are more multidisciplinary than not. There’s an organization that’s been put together called the Autism Treatment Network, which was started after the LADDERS model in 2003 with the idea that there needs to be really good medical healthcare for kids on the autism spectrum, which they frankly aren’t getting in many parts of this country.

“Many primary care physicians are put off by their behavior. They’re difficult to examine. They have a meltdown in your office and nobody’s paying you. They’ve torn up the waiting room. And most of your primary care physicians are trying to see six to 10 kids an hour in order to keep their offices open, so their willingness to spend time with families and children like this is really low, and they aren’t getting the kind of healthcare they really need. You’ve got kids that are non-verbal who can’t tell you where they hurt, and they don’t point to it either, so now you’re almost doing veterinary medicine on top of everything else.

“The ATN was put together with the idea that there would be five sites that would develop common protocols, and that we would begin to look at things such as the prevalence of GI tract issues in autism, because nobody really knows. What’s the prevalence of sleep disorders in autism? If you have a kid with sleep disorder, what should you do about it? There is currently no data for that.

“That got pretty expensive, and so the program was turned over to Cure Autism Now, which was a parent driven group on the west coast. Cure Autism Now then came under the administration of what’s called Autism Speaks, which in January of 2007 said, ‘This is a great model, but we think we need to have more of them,’ so they put out a request for proposals, and now there are 15 such sites throughout the United States with the concept of putting these multidisciplinary clinics together.

“That said, none of them are as multidisciplinary as LADDERS as yet. The goal is to help make them that way, but this is a work in progress. The concept is there, and people are willing to do it, but again it’s a question of who’s going to pay for it and are hospitals going carry the financial burden of a program like this all by themselves?”

Through the process
LADDERS is medically driven, which Bauman says differs from the way other clinics work, many of which are psychologically driven. The clinic is also unusual in that it sees adults as well. “This is a ‘birth to grave’ program,” she explains. “We’re in the Department of Pediatrics, but we see adults. We’ve been in business long enough that our kids have grown up, and they have no other place to go. We’ve now hired two adult neurologists, and we’re going to hire an intern this summer, because our population is aging.

“In terms of the referral process, whoever wants to make a referral makes a referral, and it comes to the intake social worker who speaks to the family on the phone, and sends out an intake packet, which is a series of forms. We request any records that this person has had, including lab work and birth records. Then we assign the person depending on who’s got a slot – unless the family has asked for a specific doctor – and that person then reviews the records in advance.

“The first step is taking a history, observing the child, doing an examination, reviewing the records, then sitting down with the family. There very few families, even families of young children, who have come to us who are totally surprised about a diagnosis of autism. The PR is out there so much now that the family will usually come in and say, ‘We’re concerned about him because he’s not talking,’ which is the common symptom. And so my style is to get as much information as I can to look at the child, and then I usually say to the parents, ‘What do you think is going on here?’ And almost to a one, they’ll say, ‘We’ve been worried that he might be on the autistic spectrum.’

“Then we decided if we need to do further evaluations, and if the family is not from the local area, we give them the numbers of specific people they can call who we know will do a good job. It is their responsibility to make that contact. But I also give them my email, and so does everybody else in the clinic, so that if it doesn’t work out, I need to know that so that we can either make a referral or we can run interference for them because I want those evaluations done. Then I usually meet with the family after the evaluations are done, and we’ll pull the child apart and we’ll put him back together again. We’ll hopefully have started services for this child so that he’s getting home-based services from somebody.”

Bauman explains that if the case involves a school-aged child, LADDERS often sends someone out to look at the school program, because a great education plan could be compromised by a bad classroom, or vice versa. And if the family needs an advocate or a lawyer, LADDERS staff try to help with that as much as they can. “The goal is for us to get these kids the services they need so they can make the progress they are capable of making,” she says. “We follow these kids pretty tightly, and the reason we do that is not that I distrust the parents, it’s more of a distrust of the school district; if we see the child every three to six months, then the school system knows that some outside person is watching them. A lot of things could happen that are outside our control. For example, if the speech and language pathologist goes on maternity leave and the kid doesn’t get speech therapy for three months, I want to know that, because that means he needs to get it someplace else.
   
“We also help families negotiate the healthcare system as best we can. They’re getting tighter and tighter with what they will and won’t fund. We’ve got letters of appeal on our computers on templates, because we’ve put out so many of these things. We need to find resources wherever we can find them to help families get through this. This is a 24/7 job for these families, they’re just trying to take care of their kids. To negotiate with the school district, or with the healthcare system, is not easy.

“Our hope is that because this is a one stop shop, all the people who are working with this child are in a position to talk to each other. Families know that if they get into trouble, they can pick up the phone and call us – that there’ll be somebody there who will help them – and I hope this reduces the anxiety and the stress they have in their lives.

“The other thing is that’s helped us all is that we have all learned from each other. I can just walk down a hall and grab a therapist, or I can grab the child psychiatrist or the GI guy and say, ‘Can you just come in and look at this for a minute and tell me if we need to do a more extended evaluation, or is this something we need to solve right here?’ as opposed to making a phone call and then waiting three days for somebody to call you back, and then you’ve forgotten who the child was and what the question was. It is a much more immediate kind of way of handling kids and their families when they’re in the office.”

Different challenges
While LADDERS does see adults, mainly those who have grown up while in the program, its main clientele is made up of children and their families. Bauman says there are particular challenges involved in dealing with children as opposed to adults.

“The challenges are very different. With children, their parents obviously want their child cured. They want a typically developing child; they’re really anxious to see progress. One of our challenges is trying to keep families from doing things that they shouldn’t. Sometimes they go on the web and find somebody who’s said that such and such is going be the cure for autism, and I get very concerned, not only that they shouldn’t do it because it’s costly and there’s no proof that it does anything, but also because a lot of the stuff that’s on there is frankly risky and somewhat dangerous. I don’t think families have a way of monitoring that or have the scientific background to be able to sort it out.

“We try very hard to spend a lot of time giving them as much education as they can. Even despite that, many of them go out and do what they’re going to do. My only hope is that we can keep them from doing anything that’s really dangerous.

“Along those lines, 14 years ago we started a conference that we run every year called Current Trends in Autism. The gist of it was to bring the science of autism to parents who could speak to families in plain English without talking down to them. We certainly haven’t solved the whole problem, but this conference is oversubscribed every year, and it’s been really helpful for them to be able to hear science.”

The other challenge for Bauman and her team has been to ensure each child gets what he or she needs, according to their level on the autistic scale. This ranges from the small subset – about five percent of the patients seen at LADDERS – who are clearly autistic when they are first referred, but by the age of six or seven no longer meet the criteria. Then there are the majority of children in the middle of the scale who make variable progress to one level or another, and then the five percent on the other end who make very little progress, no matter what efforts the doctors make.

It is this last subset that preoccupies Bauman the most. “It really bothers me; I feel like they also must have something else that we’re missing. Maybe it’s some kind of underlying metabolic disorder? We’ve started to look at that now, and we’ve discovered that there is a subset of those kids who have what’s called a mitochondrial disorder. Sometimes by treating that underlying disorder, we can help the kids move along a little better.”

It can be difficult to deal with some of the medical issues and behaviors demonstrated by the most severely affected children. Bauman explains that aggressive and self-injurious behaviors are often been put down to being part of that child’s autism, but she’s not sure this is the case. “What you’ve got is a nonverbal kid who can’t tell you that they hurt or point to where they hurt who hurt, and a lot of these kids have these GI tract issues, or they have ear infections, or they have an abscessed tooth, and you need to figure out what it is and treat it. And when you treat it and identify it, then the behaviors get better, and then they can attend school or OT or speech, or whatever it is they’re doing. We try to concentrate very hard on trying to figure out if some of these behaviors have some source in the child’s general healthcare. And the results have been amazing.”

One of the key strengths of the LADDERS program is its emphasis on treating developmentally disabled people as individuals. Bauman points out that it’s important to realize that even those on the autistic spectrum are a very heterogeneous group. “You go to some towns and they say, ‘We have a classroom for autistic kids.’ That’s just great, except each one of those kids is going to be different, and they all have a slightly different learning style, and unfortunately you’re going to have to figure out how Jimmy learns and how Sally learns, and that this is not a one-size-fits-all scenario.

“There’s a very apt saying: ‘If you’ve seen one child with autism, you’ve seen one child with autism.’ You’ve got some general concepts that you can bring to this thing, but each one of these kids is different, and it’s critically important to see each one as separate. There isn’t this automatic thing that you do every time. Some kids will do very well with applied behavioral analysis. Some kids will do terribly with it. Some kids will do well with floor time and vice versa. Some kids will need a little of both. It really is hard –you have to see what fits with the child and what fits with the family, and it’s a very individualized thing each time.”

Margaret Bauman is the founder of the Learning and Developmental Disabilities Evaluation, which is affiliated with the MassGeneral Hospital for Children in Boston, Massachusetts.