The following request for information came to me recently:
Hello I am emailing for advice and resources. I attended the seminar on routines based early intervention in XXXX.
I am a Director of an agency and we are discussing our roles as therapists and working towards shifting our thought process.
As we begin the shift of our staff "away" from bringing toys in - I was wondering if you had any resources or lists to help me with explaining the importance, and the role the therapy bag plays in the home? and the consequences? etc
any handouts? suggetions ? feedback?
example- parents WANT the providers who bring in the toy bags, not the ones who dont. "or" the therapists who "NEEDS" the items so they can have children learn skill or have they toys available
thank you for your help
Problems With the Toy Bag
There are two major problems with the toy bag. The first is that it sends a message to families that “your junk ain’t good enough.” Why else would we be bringing in other toys and materials. I recently conducted an RBI in which the mother told me that the home visitor brought toys that she already had in the home!
The second major problem, the really serious one, is that it implies that intervention occurs during the visit. If a home visitor gets down on the floor with the child and the toy bag an starts “working with” the child, it is not surprising that the parent would believe that the child is being taught. We have made the point in many places, including on this blog, that the purpose of weekly early intervention is not to teach children—that that is futile—but rather to provide caregivers with emotional, material, and informational support.
The persistent use of the toy bag thus leads to the attribution problem of parents’ attributing their children’s progress to weekly interactions with people outside the family instead of to ongoing interactions with regular caregivers. The consequences of parents’ making this erroneous attribution are obvious.
An indicator that the toy bag user him- or herself thinks that the intervention actually occurs during the visit is that they usually take the toys away at the end of the visit. If they believed that intervention is what happens between visits, they would leave the toys.
Another concern about the implication that intervention occurs during the visit is that so much of the visit is spent on triadic play among the home visitor, the child, and toys. Does anyone know of research that documents how much time families actually spend in such triadic play? I suspect it is a very small percentage of time.
So the staff in this program need to understand first how children learn (throughout days, not in lessons or sessions) and how services work (by supporting natural caregivers, not by working with the child weekly). Until they grasp those notions, they probably won’t understand what’s wrong with the toy bag.
Why do some parents want toy-bag-wielding home visitors? It’s because of the attribution problem. Once they are conditioned to believe that their child really needs direct, hands-on lessons with a teacher or sessions with a therapist, the empty-handed home visitor will look like a fisherman who forgot his pole, a carpenter without a saw, a plumber without a wrench—you get the idea. You probably also by now understand that early intervention is about teaching people to fish with their own poles, to make cabinets with their own saws, and to fix leaks with their own wrenches.
Some therapists say they need items. Hmmmm. What items are critical? Especially, what items are critical for supporting families to teach their children functional skills that the children need to participate in their routines? Surely nothing that comes out of a toy bag. After all, if the outcomes we’re working on are functional, that means we found out what the needs were in everyday contexts. We need to be working with the materials that are in those everyday contexts.
In addition to therapists or teachers saying they need items to do their home visiting job, other excuses for taking toy bags abound. One is that the toy bag items are for instruction; home stuff is for generalization. Another is that some homes have nothing (people in the U.S. actually say that with a straight face). Yet another is that parents want to see what their children might like. This is actually a reasonable reason to take toys—for children and families to try them out, but then leave them there for at least a week. Some fake interaction on a home visit doesn’t tell you whether the child will continue to be interested in the toy. These are mostly excuses that toy bag addicts make.
Yes, a number of experts in early intervention have identified the obsession with toy bags as an addiction! Some behaviors common to addicts will surface when toy bag addicts are told to stop taking them.
But program managers need to be prepared to ban toy bags, if they understand the points I’m making here. You can’t expect people to do something (or stop doing something) if you don’t tell them to do it (or stop doing it). The occasional bright home visitor will get it and abandon the toy bag as a result of training or reading or some other self-directed learning. But most addicts need to be told to stop.
The methadone treatment I suggest is a combination of the Routines-Based Interview and the Vanderbilt Home Visit Script. A future blog posting can address the VHVS, if there is interest. It was included in the training of the person who wrote me with this excellent question (at the beginning of this posting).
In conclusion then, (a) the staff need learn how children learn and how services work, (b) the program needs to ban toy bags (they are both symbolic and necessary for the propagation of atheoretical and nonempirical early intervention), and (d) the staff need to be trained to be support providers or consultants to the families. Only then will children get the amount and quality of early intervention they deserve, given the best available evidence.
Thursday, October 11, 2007
Monday, September 3, 2007
What Kind of Strategies Should We Articulate on the Initial IFSP?
What’s the Issue?
The issue in developing initial IFSPs is how detailed the strategies should be, considering we don’t know the child and family that well. In addition, many states are struggling to meet the 45-day limit, and the pressure to develop strategies can result in too much assessment too early in the process. At eligibility determination, for children with potential delays, the question to answer is in or out? Developing strategies requires answering the questions Why doesn’t the child perform the skill and What has the family already done? This entry addresses what the statute says about strategies on the IFSP, what kinds of guidelines states are providing, and what my recommendations are.
A related issue is, if strategies must be on the IFSP, according to State rules, what does it take to change them?
There is a question about whether strategies should be developed and inserted on the IFSP between outcome selection and the initiation of services. In states where strategies are required to be described on the form, this is the usual place in the process where that would happen.
Statute and Regulations
Although most states have a place for “strategies” or “action steps” on their recommended IFSP forms, in fact the law does not specify that such things are required on the IFSP. It says the following:
“(3) a statement of the measurable results or outcomes expected to be achieved for the infant or toddler and the family, including pre-literacy and language skills, as developmentally appropriate for the child, and the criteria, procedures, and timelines used to determine the degree to which progress toward achieving the results or outcomes is being made and whether modifications or revisions of the results or outcomes or services are necessary;
“(4) a statement of specific early intervention services based on peer-reviewed research, to the extent practicable, necessary to meet the unique needs of the infant or toddler and the family, including the frequency, intensity, and method of delivering services;
“(ii) Method means how a service is provided.”
“Procedures” and “method” can be location, model of service delivery (e.g., consultation, direct), and so on. Nowhere does the law stipulate that task analyses, specific activities, or even routines in which to intervene must be documented on the IFSP.
State Guidelines
If a form exists, with a space for documenting certain information, the rule or at least common wisdom is that that space must indeed contain information. Many states have therefore conditioned early interventionists, either by the form alone or by actual training, to insert strategies into the IFSP. For example, South Dakota implies that strategies must be on the IFSP, because it gives information about what to do when changing them ((http://www.doe.sd.gov/oess/Birthto3/word/APP_A_PAGE9.doc). A number of states imply that the IFSP must contain strategies by referring to linking “IFSP” and “strategies,” such as Florida’s policies: “Strategies on the IFSP indicate the activities that the family or caregivers will perform to support the child’s acquisition of basic skills needed to obtain the functional outcome and enhance development” ((http://www.doh.state.fl.us/AlternateSites/CMS-Kids/EarlySteps/EarlyStepsPolicy.pdf). Thes policies then do go on to refer to “initial strategies” that would be followed by “intervention activities and experiences that promote learning.” Vermont similarly discusses “IFSP strategies” (http://www.dcf.state.vt.us/cdd/pdfs/SPP_Part_C_12-02-05_Vermont_Final_R.pdf). Indiana discusses strategies that are “written into the IFSP” (http://www.in.gov/fssa/first_step/July2006_Best_Practice.html and http://www.firststepssoutheast.org/forms/bestpractices.pdf). Virginia similarly implies strategies on the IFSP but does acknowledge that “there may be more frequent changes in strategies as the Part C provider continues learning about the activity settings, routine…” (http://www.infantva.org/documents/pr-OrientationToPartC.pdf). Kentucky identifies assisting the team in developing strategies as a service coordination rule during the IFSP meeting (http://chfs.ky.gov/NR/rdonlyres/CA59E944-9947-415E-A83C-6545DB3BA09A/0/RES12PSCResponsibilitiesChecklist.pdf). Maine also mentions strategies in the context of this meeting (http://www.maine.gov/education/speced/cds/plan/cds_plan_submitted113005.pdf). Missouri, however, correctly points out, “Strategies/activities are optional” (http://dese.tekdevelopment.com/422.html).
The issue in developing initial IFSPs is how detailed the strategies should be, considering we don’t know the child and family that well. In addition, many states are struggling to meet the 45-day limit, and the pressure to develop strategies can result in too much assessment too early in the process. At eligibility determination, for children with potential delays, the question to answer is in or out? Developing strategies requires answering the questions Why doesn’t the child perform the skill and What has the family already done? This entry addresses what the statute says about strategies on the IFSP, what kinds of guidelines states are providing, and what my recommendations are.
A related issue is, if strategies must be on the IFSP, according to State rules, what does it take to change them?
There is a question about whether strategies should be developed and inserted on the IFSP between outcome selection and the initiation of services. In states where strategies are required to be described on the form, this is the usual place in the process where that would happen.
Statute and Regulations
Although most states have a place for “strategies” or “action steps” on their recommended IFSP forms, in fact the law does not specify that such things are required on the IFSP. It says the following:
“(3) a statement of the measurable results or outcomes expected to be achieved for the infant or toddler and the family, including pre-literacy and language skills, as developmentally appropriate for the child, and the criteria, procedures, and timelines used to determine the degree to which progress toward achieving the results or outcomes is being made and whether modifications or revisions of the results or outcomes or services are necessary;
“(4) a statement of specific early intervention services based on peer-reviewed research, to the extent practicable, necessary to meet the unique needs of the infant or toddler and the family, including the frequency, intensity, and method of delivering services;
“(ii) Method means how a service is provided.”
“Procedures” and “method” can be location, model of service delivery (e.g., consultation, direct), and so on. Nowhere does the law stipulate that task analyses, specific activities, or even routines in which to intervene must be documented on the IFSP.
State Guidelines
If a form exists, with a space for documenting certain information, the rule or at least common wisdom is that that space must indeed contain information. Many states have therefore conditioned early interventionists, either by the form alone or by actual training, to insert strategies into the IFSP. For example, South Dakota implies that strategies must be on the IFSP, because it gives information about what to do when changing them ((http://www.doe.sd.gov/oess/Birthto3/word/APP_A_PAGE9.doc). A number of states imply that the IFSP must contain strategies by referring to linking “IFSP” and “strategies,” such as Florida’s policies: “Strategies on the IFSP indicate the activities that the family or caregivers will perform to support the child’s acquisition of basic skills needed to obtain the functional outcome and enhance development” ((http://www.doh.state.fl.us/AlternateSites/CMS-Kids/EarlySteps/EarlyStepsPolicy.pdf). Thes policies then do go on to refer to “initial strategies” that would be followed by “intervention activities and experiences that promote learning.” Vermont similarly discusses “IFSP strategies” (http://www.dcf.state.vt.us/cdd/pdfs/SPP_Part_C_12-02-05_Vermont_Final_R.pdf). Indiana discusses strategies that are “written into the IFSP” (http://www.in.gov/fssa/first_step/July2006_Best_Practice.html and http://www.firststepssoutheast.org/forms/bestpractices.pdf). Virginia similarly implies strategies on the IFSP but does acknowledge that “there may be more frequent changes in strategies as the Part C provider continues learning about the activity settings, routine…” (http://www.infantva.org/documents/pr-OrientationToPartC.pdf). Kentucky identifies assisting the team in developing strategies as a service coordination rule during the IFSP meeting (http://chfs.ky.gov/NR/rdonlyres/CA59E944-9947-415E-A83C-6545DB3BA09A/0/RES12PSCResponsibilitiesChecklist.pdf). Maine also mentions strategies in the context of this meeting (http://www.maine.gov/education/speced/cds/plan/cds_plan_submitted113005.pdf). Missouri, however, correctly points out, “Strategies/activities are optional” (http://dese.tekdevelopment.com/422.html).
Recommendations
Consider how much information we have about the child’s functioning at the conclusion of outcome selection. Theoretically, we know there are concerns (intake), we know the child is eligible, we know what the child’s performance is like during routines (assuming a decent needs assessment, such as a Routines-Based InterviewTM, has been conducted), and we know what the family wants as outcomes. What we probably do not know is (a) why the child is unable to do things the family has reported on during assessment and (b) what strategies the family has tried. For practical reasons—and in compliance with the federal law, for initial IFSPs, I recommend the following.
- Eliminate strategies from the form, leave that space empty, or put in minimal information (e.g., “emotional, material, and informational support). Expecting evaluators to capture enough child-functioning information to recommend strategies is asking much of them, considering the 45-day rush. Let them conduct their functional assessments once the rush to get the child in services is over. The assessments will be more valid.
- If it would be helpful to have further information, put in “consultation from ____.” Avoid “assessment from ____” to avoid having to get signed permission and having to write an assessment report.
- Once services have begun, obtain the consultation to understand why the child needs help and to receive suggestions about intervention.
- Develop strategies on the basis of input from any further assessment or consultation (i.e., those that occurred after the child was in services).
- Change strategies as needed, without reconvening the IFSP team or calling official meetings.
Should Strategies Be Documented?
Probably, but not on the official document, which unnecessarily burdens the team trying to meet the 45-day deadline. Functional, family-centered, routines-based strategies could be manifold and dynamic, so capturing them on paper might be problematic. Remember, the law does not require them.
Old Blog Entries
The following entries were copied from the previous blog, which went belly up.
· Deciding on the Primary Service Provider
Wednesday, June 20, 2007 at 3:15 PM CDT
In our model of early intervention in natural environments, we have developed the concept of the "most likely primary service provider" (MLPSP). This is the service provider who participates in the development of the initial IFSP, in situations where dedicated service coordinators are used. The purposes of designating an MLPSP are (a) to establish continuity between needs assessment and service provision and (b) to help the service coordinator (who might not have a background in intervention). Even if a community does not use the primary-service-provider (PSP) approach--also known as the transdisciplinary approach--it is useful to involve a "most likely service provider." This designation ("most likely") is used because, technically, no service provider is selected before outcomes have been decided. Theoretically, it's possible the ML(P)SP could be different, once outcomes have been established. Usually, this doesn't happen; the whole point is to have continuity, so you have to do a decent job of selecting the ML(P)SP.
The following question has come up: I have a question about assigning the most likely service provider so that they can participate from the "get-go" in the RBI...how do most state's select the person...especially if there are various options. really want to see our state get to this but do not know how the service coordinator determines this prior to the RBI and outcomes being selected.
In states where they have a history of independent vendors competing for kids it’s different from states where they have a history of cooperation, so it varies. In the former, I have helped states develop local interagency agreements about processes for making the decision, which might involve taking into consideration types of children, “openings,” taking turns, geography, individual-provider compatibility with the family (e.g., language spoken). If the competitors overlap in types of children and geography, then who has openings and taking turns becomes important. We have required the point of entry to document what they do with each referral, so, when an agency feels dissed, they can point to the data to show that they took turns, inquired about openings, made a decision based on personal compatibility, and so on.
It's a good question, and the answer lies in local interagency coordination, especially between the single point of entry or service coordination office and the providers. Having a transparent process and data about how the process is being implemented are the keys to implementation.
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· What's Functional About Blowing Bubbles?
Tuesday, May 29, 2007 at 5:46 AM CDT
The following question was recently posed to me:
I am a speech/language pathologist, working within poorer SES Latin communities. It is difficult to work on outcomes related to feeding, without materials (ie: bubbles, special spoons, cups, etc.). How do you propose this gets done? See, this is the piece I'm still puzzled about. I need to be given SOLID examples of providers in my "shoes" so to speak, who are utilizing this approach. For now, I still feel that in some aspects I need the "Therapy Bag". I don't know if you are given this type of feedback but I'd appreciate a response.
To a certain extent, I am teaching parents and caregivers in our FT (Family Training) Sessions; however, the Speech therapy sessons (ST), I still tend to use my own materials, as many o the families don't have the materials. However, I often give out small bubble tumblers (no charge) that cost say $2 and change in Target, so this way the families can practice "blowing bubbles" to improve speech production, if the outcome is "Johnny will say more words, to indicate his needs.
My response:
I think I see a fundamental issue in your questions--it's the definition of functionality. When you say, "It is difficult to work on outcomes related to feeding, without materials (ie: bubbles, special spoons, cups, etc.)," it's not clear that feeding itself is what's being worked on. In a functional approach, the special spoons or cups might indeed be used--assuming they would be left with the family, so the child could actually use them in daily feeding and drinking. Bubbles are another story! You can save your money, even though it’s nice of you to leave them in the homes. Bubble blowing is almost never a functional skill in early intervention and will not help “Johnny say more words.” Children do not need to blow bubbles to be able to eat or to talk. That’s a fact. Kids in early intervention are often taught bubble blowing and blowing through straws, although I have never come across these as functional needs.
The solid examples that might help are the strategies that would come from specific, measurable, functional outcomes. I will pull some feeding and language ones from real Routines-Based Interviews.
(Unfortunately, tables don't reproduce properly on blogsource. The next section was a table, with RBI Outcome, Measurable outcome, and Strategies as the column headings. There are four outcomes.)
RBI Outcome
Measurable outcome
Strategies
Miracle communicate with others in the family at play time
Miracle will participate in play time by communicating with others in the family. We will know she can do this when she says or signs five things to someone in the family at play time every day for three consecutive days
1. Assess Miracle’s interests
2. Teach parents to get Miracle engaged
3. Teach parents to join Miracle in what she is interested in
4. Teach parents to elicit words related to Miracle’s engagement (e.g., names of toys, actions, “more,” “finished,” “mine,” “yours”)
5. Have parents decide on 10 target words
6. Teach parents to emphasize these words when following Miracle’s cues at play time
Eat meals by mouth to be able to eat with the rest of the family; increase variety of foods
Miracle will participate in family meals by eating by mouth. We will know she can do this when she eats ½ cup of pureed food, ½ cup of soft foods, and ½ cup of chewable foods in 1 week for three consecutive weeks.
1. Assess Miracle’s tolerance for pureed foods—how much can she currently eat?
2. Decide on a rate of increase (e.g., increase by 1 tablespoon) and increase only when Miracle eats three consecutive meals at that criterion.
3. After ½ cup of pureed is achieved, introduce soft foods at the rate of 1 tablespoon at a time; follow the increase rate as above until she eats three consecutive meals of ½ cup of soft foods.
4. Follow Step 3 with chewable foods.
5. When switching from one consistency to the next, continue to give some meals with the previous consistencies.
6. Your job is to coach the family through these steps.
Communicate his needs (drink, don’t feel well, eat, more, play, TV, outside)
Child will participate in meals, indoor play, TV times, and outside play, by communicating. We will know he can do this when he makes 3 requests or answers 6 questions in each of the above situations (i.e., routines) on three consecutive days.
1. Teach parents to use incidental teaching, as described for Miracle in the first outcome—getting the child engaged, following the child’s lead, and eliciting elaboration.
2. On home visits, watch the parent doing this, giving data-based feedback, to increase the parent’s competence and confidence.
Eating with combination of textures; vegetables, fruits
Child will participate in meals by eating combinations of textures, including vegetables and fruits. We will know he can do this when he eats 1 cup with one soft and one chewable food during three meals in three days.
1. Assess with the parent the child’s food preferences for soft and chewable foods.
2. Teach the parent to shape up the eating behavior by gradually (over days) increasing the amount of mixed-texture food.
3. Teach the parents to keep track of how much of which kind of food the child eats.
Obviously, some more specific suggestions would enter into the parent-professional conversation, but these plans would keep the conversation focused on the needs the parent expressed.
I was being only somewhat facetious when I referred to the addiction to the toy or therapy bag. One of the ways we know it’s an addiction is because people (a) don’t believe it’s an addiction, thus proving them to be addicts; and (b) cannot see the fallacy in their arguments for continuing the use of the bag, thus operating “in denial.” To summarize the problems with the bag:
1. Most items are taken out of the home, thus preventing the child from learning from them;
2. Use of the bag reinforces in parents the idea that there is something magical about the professional-child interaction, when, in fact that interaction is not that important;
3. It implies that the family’s junk isn’t good enough; and
4. Joint toy play, which describes a lot of toy bag activities, constitutes a very small percentage of families’ natural interactions with the children, thus rendering it largely irrelevant.
I hope this helps a little. Remember that functional outcomes come from functional needs, which can only be assessed by asking the family about needs in daily routines. If you do that functional, family-centered needs assessment—the RBI—you will have functional things to work on with the family—a good long list of items. Your visits with the families will fly by.
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· 8 Problems With Some State Systems
Monday, April 16, 2007 at 7:52 AM CDT
1. Too many people involved in the IFSP development process and in service delivery (e.g., intake service coordinator, two or more evaluators, ongoing service coordinator, three or four providers--all these being different people)
2. No family outcomes on the IFSP!
3. Vague, incomplete child outcomes (e.g., two or three general outcomes, usually about movement and communication)
4. Disjointed providers--early interventionists on the IFSP who do not communicate with each other, usually because they are each employed by a different agency or are self-employed
5. Too much family time spent in receiving services, which is time that could be spent in interactions with the child, working, and so on
6. Overtesting of kids, especially those entering early intervention with an established condition (i.e., "medical diagnosis") who therefore do not need scores for determining eligibility
7. Misunderstanding of requirements for assessment of present level of performance (i.e., current level of functioning)--when do we need scores and when do we need descriptions?
8. Lack of family needs assessment (i.e., functional needs the child and family might have)
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· "Robin McWilliam says...": Service intensity
Friday, February 23, 2007 at 1:44 PM CST
At first, I used to be flattered when I heard I was being quoted. Now, I get nervous.
I occasionally hear that I am quoted by program administrators in a dispute with families about the amount of service the family should receive. Just today, for example, I spoke to an advocate who knew of a young child with apraxia and another with autism who had been told that Robin McWilliam says that one hour a week of early intervention is sufficient, or something to that effect.
First, in this case, the diagnoses of the children were apparently salient information. To some extent, this might be true, but we know that children with most diagnoses, including autism, are more alike other children than different from them. But some people (e.g., specialists, researchers, parents) have a lot to gain, in some cases literally (i.e., $$$), by emphasizing the diagnosis and the differences. This can lead to the establishment of separate programs, segregation of the children, false information to families, and syphoning of resources from other children and families. It can also lead to focused attention on discovery and treatment--a good thing. I do believe, however, that children and families have more to gain by emphasizing similarities with other children, including children without disabilities, than by emphasizing differences.
Second, the hours of service is really not what matters. It's the amount of intervention. In our work, we make this point over and over. Children should have the best quality intervention and should have the most they can get. The best quality intervention for young children means that it (a) is in the context where the child needs it; (b) promotes the child's engagement, independence, or social relationships; and (c) involves elaboration of the child's interest or engagement. They will get plenty of intervention because of (a): It should be woven throughout the fabric of the child's everyday life--or at least on those wefts where it's needed. Clearly, then, this intervention must come from the child's natural caregivers, who are usually parents and other caregivers (e.g., child care providers). Service is professional activity--the people who come in from outside the home or child care setting. It will no doubt be obvious that increasing the amount of time a professional shows up will have little effect on the quality or amount of intervention the child receives.
But perhaps it has some effect, and this is where the challenge of the child's disability might play a role. Providing many children with developmental support with the kind of incidental teaching I described above might not require a lot of professional time. If the child's behavior is under control, if the child's communication development is simply delayed, if the caregivers understand how to tweak their routines to help the child developmentally, and if the caregivers have the emotional and physical stamina to keep at it, a modest amount of support from a professional might be enough. "Enough" means that increases over a given amount of service would not result in a substantial increase in the amount of intervention.
I will soon post here guidelines for deciding on amounts of service. In the meantime, if you hear "Robin McWilliam says...," make sure it really is what I'm saying and not some convenient interpretation.
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· Where is the Family During Therapy?
Thursday, December 28, 2006 at 10:11 AM CST
In a broadcast of an often-repeated documentary about Treacher Collins syndrome, Juliana Wetmore's mother is driving Juliana to therapy. The first questions might be Why are they having to go to therapy rather than the therapists coming to the home? Did the family get a choice? But we'll move on to the more troubling questions. Juliana's mother says that Juliana likes speech therapy and physical therapy--they are like play time for her. Not everyone might agree, but I'm thinking this is sounding good so far. Juliana was still a toddler. But then her mother says that Juliana does really well in therapy but hasn't done those things for her. Red flags! We then see Juliana sitting at a little table across from a speech-language pathologist, who is getting her to sign and put puzzle pieces in the puzzle. It's good that she's getting functional communication: Juliana essentially has no mouth but does have intact use of her hands. A toddler sitting at a table might be developmentally weird, but in the grand scheme of things.... We see Juliana in physical therapy, which is focused on her walking--again, this is functional.
But here's the kicker: There's no sign of her mother anywhere during either therapy session. Putting 2 and 2 together...
(1) Julina's mother cannot get Juliana to do things that nonfamily members can +
(2) these things are done in a context that is only relevant for therapy (i.e., it is not where daily routines or significant events happen) +
(3) her mother is not present to learn how to elicit these behaviors in relevant contexts +
(4) Juliana is not old enough to be able to transfer the skills on her own (see No. 1 above as evidence).
(5) Therefore, this therapy is nonfunctional.Does it really matter that it is logically nonfunctional? After all, it is fun, and perhaps Juliana's mother feels that she has some control over her child's developmental progress because she takes her to therapy. But that's one of the problems. Her mother has been led to believe that Juliana is benefiting from this therapy. It is clear in the documentary that the parents do a lot for Juliana and her sister, which actually probably confuses the evaluation of the efficacy of therapy. Juliana is making progress, so everyone might be attributing this to the therapy. Research that Gloria Harbin and I have done on service utilization included this kind of attributional finding. My problem with leading parents to this attribution is that it is misleading them. Children of Juliana's age would be making progress because of the learning opportunities provided in the hundreds of interactions in her daily life, not because of isolated, decontextualized sessions with therapists, however fun and "functional" they might be. The reason we would know that the daily "incidental teaching" is working more than the therapy is that the mother has seen progress but has not seen Juliana do the things they are working on in therapy. One can only wonder how much better off Juliana would be if the well-meaning therapists concentrated on the mother rather than on Juliana.
More disturbing in the big picture is the fact that families see this otherwise inspiring documentary and get the wrong idea about how children learn and how therapy works.
On the other hand, an inspiring story appeared recently in the New York Times. The headline is "Parenting as Therapy for Child's Mental Disorders," by Benedict Carey. The report is about a successful parent education approach to treating children with ADHD. The family is central to therapy.
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· "Direct" versus "consulation"
Tuesday, December 12, 2006 at 10:08 PM CST
I have confused the field by teaching that the consultative model is effective, which has led to people putting "consultation" or "consultative" on the service sheets on IFSPs and IEPs. This has provoked reactions by some professionals and families alike that direct services are preferable to consultation. Clarification is needed.
When using an evidence-based, integrated approach to serving children in classroom programs, I recommend you define this as direct services. Such an approach would be individualized within routines or group activity (see www.IndividualizingInclusion.us), where visitors to the classroom (e.g., itinerant early interventionists or ECSE teachers or therapists) work in the classroom and do not pull children out. Their role is consultative in the sense that their major responsibility is to collaborate with the classroom staff to increase the likelihood that the staff will implement individualized interventions throughout the day. The visitor to the classroom is indeed a consultant. Yet, an integrated approach can be considered a direct service for two reasons: (a) the visitor to the classroom will have hands-on contact with children for the purpose of demonstration, and (b) an effective evidence-based approach should be reimbursed at a higher level than any other approach would be.
The problem has been that the terms "direct" and "consultative" have been applied to intensity instead of to model of service delivery, and direct services have been reimbursed at a higher rate. Therefore, "direct" is considered ongoing and frequent, and "consultative" is considered infrequent. However, integrated approaches should be frequent, to ensure that teachers have enough collaboration to help them be effective individualizers.
So, although the model is considered consultative, the bureaucratic designation should be direct, assuming this guidance is consistent with local or state definitions of these terms.
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· The RBI and Ecocultural Theory
Wednesday, November 29, 2006 at 8:48 AM CST
An anthropologist I highly respect, Tom Weisner (UCLA), and I have been engaged in parallel play. I have known his work for years, and we have met a couple of times. With Cindy Bernheimer, a former Chair of the DEC Research Committee, and other colleagues, Weisner has studied families from an ecocultural perspective. I strongly encourage you to read his work but especially
Weisner, T. S. (2002). Ecocultural understanding of children's developmental pathways. Human Development, 45, 275-281.The following points will show the parallels in our work.
1. Weisner describes ecocultural theory as being "based on the idea of locally rational action.... The 'local situation' consists of everyday routines and activities" (p. 277), and people use their schemas and what anthropologists call shared knowledge to make adaptations in their daily routines--adaptations that work for them and allow them to survive. These adaptations influence children's development.
2. Cultural pathways for children's development, according to Weisner, "are made up of everyday routines of life, and routines are made up of cultural activities (bedtime, playing video games, homework, watching TV..." (p. 276). Obviously, therefore, the Routines-Based Interview, which my colleagues and I developed in the 1980s (see McWilliam, 1992) is relevant for understanding children's cultural pathways.
3. Weisner points out that the single most important thing one can do to influence the development of an intact infant "would be to decide where on earth--in what human community--that infant is going to grow up" (p. 276). How families carry out their routines will vary individually but will have some commonalities within the region of the world, country, or city where they are situated. The cultural pathways for the infant are, to some extent, determined by how families in that place conduct their routines.
4. The behaviorist in me concurs strongly with Weisner's assertion that developmentalists should think about children "as already situated in some human community" (p. 277)--that would bring culture into developmental research. Context, also called the ecology, are vital for understanding children's development and behavior.
5. The Ecocultural Family Interview (EFI) was developed in the 1990s to collect data on children and families in their daily routines (Weisner, Bernheimer, & Coots, 1997), and the RBI was developed for more or less the same reason but for a clinical application--to give families a framework for selecting intervention goals. The EFI is "one way to enter children's and families' cultural pathways [by asking] parents and children directly about their daily routines and activities" (p. 277). Just like the RBI, "the EFI is an open-ended, semistructured conversation that covers a broad range of topics related to a family's daily routines" (p. 277). The latest published description of the RBI, for comparison, is in McWilliam, R. A. (2005). Assessing the resource needs of families in the context of early intervention. In M. J. Guralnick (Ed.), A developmental systems approach to early intervention (pp. 215-234). Baltimore, MD: Paul H. Brookes Publishing Co.Weisner, with the EFI, has had a similar experience to ours with the RBI: "Parents sometimes see this as a chance for a 'life review', or at least 'multiple-week review', encouraging them to reflect on what they are doing and where they are going" (p. 278). First, families have said about the RBI things like, "This was a life-changing experience." Second, the reflection on where they are going is consistent with the goal-planning purpose of the RBI.
6. Professionals who are used to assessment being entirely driven by the professional evaluator become concerned at the lack of apparent comprehensiveness of the RBI. Weisner points out that "there are no 'false negatives' in the EFI data" (p. 278), because the interviewer asks about important topics. That is also true in the RBI. That doesn't mean that every detail will be uncovered, but of course traditional structured assessment also covers only those items the developers thought to include on the test. But the RBI, like the EFI, is structured enough to ascertain the information for which the interview was designed. The EFI covers for each routine the script for the activity, feelings and motives, goals/values, people who are or should be involved, and the tasks to get done. The RBI covers for each routine what everyone is doing, what the child is doing, how the child is engaged, how independent the child is, what social-relationships behaviors the child displays, and how satisfied the parents are with the routine.
7. The EFI includes scores, which the RBI does only for satisfaction with home routines and goodness of fit of classroom routines. With the EFI, the interviewer scores items "describing the family routine and how it gets created and sustained" (p. 278). The UCLA researchers have attained reasonable interrater agreement on those scores. I have been contemplating a scoring system for the RBI, beyond the one per routine we currently have. It would add to the reliability of the longitudinal data.
8. The final serendipitous connection between Weisner's work and ours is about child engagement. Weisner writes, "Ecocultural theory is based on the idea that children's engagement in more sustainable routines and activities is good for children, and produces well-being, ...[which] consists of engaged participation in cultural activities deemed desirable by a cultural community... and the psychological experiences produced thereby" (p. 279). Our research on engagement has influenced the structure of the RBI, and what I have come to call "engagement theory" is central to our research, training, and service. It is consistent also with the World Health Organization's notion that "participation" (similar to engagement) is the critical dimension of successful functioning.
If our work and Weisner's are indeed as well connected as it appears, it is very gratifying for us to be in such worthy company. More importantly, from an epistemological, methodological, and conceptual standpoint, it is perhaps not coincidental that well-conceived practices that begin in ostensibly disconnected places, disciplines, and research groups will eventually find their "points of validation"--a term I'll use to claim that our RBI must be good if it's so similar to Weisner's EFI.
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· What the law says about where outcomes should come from
Wednesday, November 15, 2006 at 5:33 PM CST
IDEA does not specify where anticipated results or outcomes (i.e., individualized goals) on the IFSP should come from.I have been looking for guidance in the law about where individualized outcomes on the IFSP should come from. My reading of the statute provides no answer to this question. The outcomes do not have to come from the multidisciplinary assessment nor from the CPR. Unfortunately, however, links between the child assessment and services and between the family assessment and services are made. They should have made it clear that the outcomes come between assessment and services.
Here’s the part of 108-446 I’m referring to:
‘‘SEC. 636. INDIVIDUALIZED FAMILY SERVICE PLAN.
‘‘(a) ASSESSMENT AND PROGRAM DEVELOPMENT.—A statewide system described in section 633 shall provide, at a minimum, for each infant or toddler with a disability, and the infant’s or toddler’s family, to receive—
‘‘(1) a multidisciplinary assessment of the unique strengths and needs of the infant or toddler and the identification of services appropriate to meet such needs;
‘‘(2) a family-directed assessment of the resources, priorities, and concerns of the family and the identification of the
supports and services necessary to enhance the family’s capacity to meet the developmental needs of the infant or toddler; and
‘‘(3) a written individualized family service plan developed by a multidisciplinary team, including the parents, as required by subsection (e), including a description of the appropriate transition services for the infant or toddler.
‘‘(b) PERIODIC REVIEW.—The individualized family service plan shall be evaluated once a year and the family shall be provided a review of the plan at 6-month intervals (or more often where appropriate based on infant or toddler and family needs).
‘‘(c) PROMPTNESS AFTER ASSESSMENT.—The individualized family service plan shall be developed within a reasonable time after the assessment required by subsection (a)(1) is completed. With the parents’ consent, early intervention services may commence prior to the completion of the assessment.
‘‘(d) CONTENT OF PLAN.—The individualized family service plan shall be in writing and contain—
‘‘(1) a statement of the infant’s or toddler’s present levels of physical development, cognitive development, communication development, social or emotional development, and adaptive development, based on objective criteria;
‘‘(2) a statement of the family’s resources, priorities, and concerns relating to enhancing the development of the family’s infant or toddler with a disability;
‘‘(3) a statement of the measurable results or outcomes expected to be achieved for the infant or toddler and the family,
including pre-literacy and language skills, as developmentally appropriate for the child, and the criteria, procedures, and timelines used to determine the degree to which progress toward achieving the results or outcomes is being made and whether modifications or revisions of the results or outcomes or services are necessary;
‘‘(4) a statement of specific early intervention services based on peer-reviewed research, to the extent practicable, necessary to meet the unique needs of the infant or toddler and the family, including the frequency, intensity, and method of delivering services;
I’m looking at this now because I’m helping a number of states and programs figure out how to insert a routines-based needs assessment into their IFSP development process. In our legalistic, accountability-driven atmosphere, people want to know what’s required—what the law says. I knew the law didn’t mandate a functional needs assessment, but I wanted to make sure I knew about any actual or inferred links from the outcomes back to any earlier step (e.g., formal assessment for eligibility or the multidisciplinary assessment that all kids are offered). My recommendation to programs and states is, for children coming in under possible delay, either test them first and then do an RBI, which produces the outcomes (goals), or score a test during the RBI, if the child is highly likely to be delayed and if the test is pretty functional. For children coming in under established condition, just do an RBI, which produces information on current levels of functioning in the five domains, so you can count that as the multidisciplinary assessment (as long as you have indeed involved two people from different disciplines somewhere along the way) and it gives you the outcomes.
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· Three-tiered model applied to early intervention?
Friday, October 27, 2006 at 10:01 AM CDT
Could we incorporate prevention and response-to-intervention models into early intervention?
A doctoral student at the University of Wisconsin--Madison and I are writing a chapter for the next edition of Best Practices in School Psychology, in which we pose the possibility that the three-tier model should be applied to home visiting practices and possibly other practices in early intervention. The three-tier model is ubiquitous in school psychology now and is alluded to (perhaps even directly referred to) in IDEA 2004, with the response-to-intervention (RTI) language. The tiers are (1) universal or preventive services, (2) problem-focused services, and (3) highly specialized services. The expectation is that Level 1 is received by the vast majority of students, Level 2 by a small percentage of students (e.g., 5-15%), and Level 3 by a very small percentage (e.g., < 5%).
This doesn't fit perfectly into early intervention, because infants and toddlers don't get services unless something's wrong--or unless they are in child care. Preschoolers might be in some group care setting where they could receive preventive (AKA preventative) services. But let's focus this discussion on families receiving home-based early intervention, which is over 70% of the families in Part C. What's the universal intervention they receive?
Parenting in regular routines in the home and community. Where early intervention is different from services for school-aged children is that, without the specialized services (e.g., special education), school-aged children still get some service (i.e., regular education), whereas, without specialized services (i.e., early intervention), infants and toddlers get no service. But do they get nothing?
Of course not. They get parenting, which is the most effective intervention of all (see the NICHD Early Child Care research). But we cannot for legal and moral reasons not provide families with support when they are eligible for early intervention and want it. Therefore, my thought is that we enter the family's life at Level or Tier 2, but then the focus of that level of specialized services should be to support Level 1 interventions. This should address both child and family ultimate or distal outcomes. By that, I mean children should make progress in their functioning and families should increase their quality of life. In future posts, I'll elaborate on that connection, but the main point here is that the application of the three-tiered model in early intervention should possibly be to apply specialized services (Level 2) to enhance the effectiveness of interventions delivered by parents and other natural caregivers of the child (Level 1).
What about Level 3? Those are the few services that need to be employed to meet needs that this support-based approach cannot meet. Some of them will be child-level services, and some will be family-level services. The former would include medical or allied-health services such as orthopedics, audiology, or other medical specialties, but not OT, PT, and speech. Those developmental therapies would, like special instruction or early childhood special education, be used to enhance regular caregivers' capacity. There is no need for direct hands-on by the big four (OT, PT, SLP, ECSE). The family-level services that might be needed to supplement the support-based approach might be in the counseling arena, if the family needs professional-level counseling or therapy, or in the "social work" or "service coordination" arena, if the family needs more help in securing resources than even a good home visitor can manage.
Be careful, though. Home visitors who believe their job is purely related to children's performance might eschew family support and attempt to refer to Level 3 too early. This might be where the RTI approach should come in. Perhaps the system should require that some level of intervention be tried at Level 2, especially around the emotional needs of the family, before approving the use of Level 3. Families can, of course, privately gain access to any level of service they choose. To use this three-tier model effectively, Level 2 service providers need to be trained in the support-based approach, which would include training on when to refer and when not to.
The three-tier model is not a perfect fit for early intervention, but it does provide a framework for encouraging the use of natural family and community assets (Level 1), which is desperately needed because of the field's pernicious slide towards overspecialization.
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· DEC Conference
Sunday, October 22, 2006 at 10:49 PM CDT
The annual DEC conference in Little Rock was a good opportunity to catch up with old friends such as Don Bailey, Mary Beth Bruder, Gloria Harbin, Lee Ann Jung, Beth Rous, Sharon Walsh, and Barb Wolfe. I also had the chance to see briefly a number of other friends and former students. Here are some of my highlights from the conference, bearing in mind that I could be in only one place at a time, and had meetings during sessions.
· The keynote included a wise and pointed speech by my friend Mark Wolery on the topic of using recommending practices. It also included a hilarious movie assembled by Larry Edelman.
· Before the conference, Ann Turnbull ran the second meeting of the Family Community of Practice, which was the Family Summit at the first meeting in January. The focus of this meeting was how to get supports to families that they currently are not getting. A session later in the conference provided Ann the opportunity to tell others what is going on with this community of practice. In future entries, I will talk more about this issue and about two important innovations I have been thinking about: an application of the three-tier approach and learning from multisystemic therapy.
· A meeting with Heather Shrestha of Paul H. Brookes Publishing Company about a book Amy Casey and I have written on engagement. This book will come out in 2007.
· DEC is revising the Recommended Practices, and roundtables were held to get people's input into the issues addressed by each of the strands. My strand is "interdisciplinary models," which first needs to change its title. I doubt anyone realizes this is about working with teams comprised of people from different disciplines.
· Amy and I had two posters, one on the Engagement Classroom Study we are currently undertaking and one on the preliminary study we did on the Routines-Based Interview. Many people stopped by, and Amy handled the questions in her usual admirable way.
· I attended an introductory session by Robyn Ridgely on home visiting, which she handled deftly, including questions about whether talking to families about their outcomes was a fraudulent way of providing therapy.
The DEC conference is the best all-around forum for discussion of early intervention and early childhood special education. Most of the major players in the field serve their profession by going, there are plenty of sessions for practitioners, families can absorb much information and impart suggestions, and researchers continue to contribute.
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· Deciding on the Primary Service Provider
Wednesday, June 20, 2007 at 3:15 PM CDT
In our model of early intervention in natural environments, we have developed the concept of the "most likely primary service provider" (MLPSP). This is the service provider who participates in the development of the initial IFSP, in situations where dedicated service coordinators are used. The purposes of designating an MLPSP are (a) to establish continuity between needs assessment and service provision and (b) to help the service coordinator (who might not have a background in intervention). Even if a community does not use the primary-service-provider (PSP) approach--also known as the transdisciplinary approach--it is useful to involve a "most likely service provider." This designation ("most likely") is used because, technically, no service provider is selected before outcomes have been decided. Theoretically, it's possible the ML(P)SP could be different, once outcomes have been established. Usually, this doesn't happen; the whole point is to have continuity, so you have to do a decent job of selecting the ML(P)SP.
The following question has come up: I have a question about assigning the most likely service provider so that they can participate from the "get-go" in the RBI...how do most state's select the person...especially if there are various options. really want to see our state get to this but do not know how the service coordinator determines this prior to the RBI and outcomes being selected.
In states where they have a history of independent vendors competing for kids it’s different from states where they have a history of cooperation, so it varies. In the former, I have helped states develop local interagency agreements about processes for making the decision, which might involve taking into consideration types of children, “openings,” taking turns, geography, individual-provider compatibility with the family (e.g., language spoken). If the competitors overlap in types of children and geography, then who has openings and taking turns becomes important. We have required the point of entry to document what they do with each referral, so, when an agency feels dissed, they can point to the data to show that they took turns, inquired about openings, made a decision based on personal compatibility, and so on.
It's a good question, and the answer lies in local interagency coordination, especially between the single point of entry or service coordination office and the providers. Having a transparent process and data about how the process is being implemented are the keys to implementation.
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· What's Functional About Blowing Bubbles?
Tuesday, May 29, 2007 at 5:46 AM CDT
The following question was recently posed to me:
I am a speech/language pathologist, working within poorer SES Latin communities. It is difficult to work on outcomes related to feeding, without materials (ie: bubbles, special spoons, cups, etc.). How do you propose this gets done? See, this is the piece I'm still puzzled about. I need to be given SOLID examples of providers in my "shoes" so to speak, who are utilizing this approach. For now, I still feel that in some aspects I need the "Therapy Bag". I don't know if you are given this type of feedback but I'd appreciate a response.
To a certain extent, I am teaching parents and caregivers in our FT (Family Training) Sessions; however, the Speech therapy sessons (ST), I still tend to use my own materials, as many o the families don't have the materials. However, I often give out small bubble tumblers (no charge) that cost say $2 and change in Target, so this way the families can practice "blowing bubbles" to improve speech production, if the outcome is "Johnny will say more words, to indicate his needs.
My response:
I think I see a fundamental issue in your questions--it's the definition of functionality. When you say, "It is difficult to work on outcomes related to feeding, without materials (ie: bubbles, special spoons, cups, etc.)," it's not clear that feeding itself is what's being worked on. In a functional approach, the special spoons or cups might indeed be used--assuming they would be left with the family, so the child could actually use them in daily feeding and drinking. Bubbles are another story! You can save your money, even though it’s nice of you to leave them in the homes. Bubble blowing is almost never a functional skill in early intervention and will not help “Johnny say more words.” Children do not need to blow bubbles to be able to eat or to talk. That’s a fact. Kids in early intervention are often taught bubble blowing and blowing through straws, although I have never come across these as functional needs.
The solid examples that might help are the strategies that would come from specific, measurable, functional outcomes. I will pull some feeding and language ones from real Routines-Based Interviews.
(Unfortunately, tables don't reproduce properly on blogsource. The next section was a table, with RBI Outcome, Measurable outcome, and Strategies as the column headings. There are four outcomes.)
RBI Outcome
Measurable outcome
Strategies
Miracle communicate with others in the family at play time
Miracle will participate in play time by communicating with others in the family. We will know she can do this when she says or signs five things to someone in the family at play time every day for three consecutive days
1. Assess Miracle’s interests
2. Teach parents to get Miracle engaged
3. Teach parents to join Miracle in what she is interested in
4. Teach parents to elicit words related to Miracle’s engagement (e.g., names of toys, actions, “more,” “finished,” “mine,” “yours”)
5. Have parents decide on 10 target words
6. Teach parents to emphasize these words when following Miracle’s cues at play time
Eat meals by mouth to be able to eat with the rest of the family; increase variety of foods
Miracle will participate in family meals by eating by mouth. We will know she can do this when she eats ½ cup of pureed food, ½ cup of soft foods, and ½ cup of chewable foods in 1 week for three consecutive weeks.
1. Assess Miracle’s tolerance for pureed foods—how much can she currently eat?
2. Decide on a rate of increase (e.g., increase by 1 tablespoon) and increase only when Miracle eats three consecutive meals at that criterion.
3. After ½ cup of pureed is achieved, introduce soft foods at the rate of 1 tablespoon at a time; follow the increase rate as above until she eats three consecutive meals of ½ cup of soft foods.
4. Follow Step 3 with chewable foods.
5. When switching from one consistency to the next, continue to give some meals with the previous consistencies.
6. Your job is to coach the family through these steps.
Communicate his needs (drink, don’t feel well, eat, more, play, TV, outside)
Child will participate in meals, indoor play, TV times, and outside play, by communicating. We will know he can do this when he makes 3 requests or answers 6 questions in each of the above situations (i.e., routines) on three consecutive days.
1. Teach parents to use incidental teaching, as described for Miracle in the first outcome—getting the child engaged, following the child’s lead, and eliciting elaboration.
2. On home visits, watch the parent doing this, giving data-based feedback, to increase the parent’s competence and confidence.
Eating with combination of textures; vegetables, fruits
Child will participate in meals by eating combinations of textures, including vegetables and fruits. We will know he can do this when he eats 1 cup with one soft and one chewable food during three meals in three days.
1. Assess with the parent the child’s food preferences for soft and chewable foods.
2. Teach the parent to shape up the eating behavior by gradually (over days) increasing the amount of mixed-texture food.
3. Teach the parents to keep track of how much of which kind of food the child eats.
Obviously, some more specific suggestions would enter into the parent-professional conversation, but these plans would keep the conversation focused on the needs the parent expressed.
I was being only somewhat facetious when I referred to the addiction to the toy or therapy bag. One of the ways we know it’s an addiction is because people (a) don’t believe it’s an addiction, thus proving them to be addicts; and (b) cannot see the fallacy in their arguments for continuing the use of the bag, thus operating “in denial.” To summarize the problems with the bag:
1. Most items are taken out of the home, thus preventing the child from learning from them;
2. Use of the bag reinforces in parents the idea that there is something magical about the professional-child interaction, when, in fact that interaction is not that important;
3. It implies that the family’s junk isn’t good enough; and
4. Joint toy play, which describes a lot of toy bag activities, constitutes a very small percentage of families’ natural interactions with the children, thus rendering it largely irrelevant.
I hope this helps a little. Remember that functional outcomes come from functional needs, which can only be assessed by asking the family about needs in daily routines. If you do that functional, family-centered needs assessment—the RBI—you will have functional things to work on with the family—a good long list of items. Your visits with the families will fly by.
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· 8 Problems With Some State Systems
Monday, April 16, 2007 at 7:52 AM CDT
1. Too many people involved in the IFSP development process and in service delivery (e.g., intake service coordinator, two or more evaluators, ongoing service coordinator, three or four providers--all these being different people)
2. No family outcomes on the IFSP!
3. Vague, incomplete child outcomes (e.g., two or three general outcomes, usually about movement and communication)
4. Disjointed providers--early interventionists on the IFSP who do not communicate with each other, usually because they are each employed by a different agency or are self-employed
5. Too much family time spent in receiving services, which is time that could be spent in interactions with the child, working, and so on
6. Overtesting of kids, especially those entering early intervention with an established condition (i.e., "medical diagnosis") who therefore do not need scores for determining eligibility
7. Misunderstanding of requirements for assessment of present level of performance (i.e., current level of functioning)--when do we need scores and when do we need descriptions?
8. Lack of family needs assessment (i.e., functional needs the child and family might have)
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· "Robin McWilliam says...": Service intensity
Friday, February 23, 2007 at 1:44 PM CST
At first, I used to be flattered when I heard I was being quoted. Now, I get nervous.
I occasionally hear that I am quoted by program administrators in a dispute with families about the amount of service the family should receive. Just today, for example, I spoke to an advocate who knew of a young child with apraxia and another with autism who had been told that Robin McWilliam says that one hour a week of early intervention is sufficient, or something to that effect.
First, in this case, the diagnoses of the children were apparently salient information. To some extent, this might be true, but we know that children with most diagnoses, including autism, are more alike other children than different from them. But some people (e.g., specialists, researchers, parents) have a lot to gain, in some cases literally (i.e., $$$), by emphasizing the diagnosis and the differences. This can lead to the establishment of separate programs, segregation of the children, false information to families, and syphoning of resources from other children and families. It can also lead to focused attention on discovery and treatment--a good thing. I do believe, however, that children and families have more to gain by emphasizing similarities with other children, including children without disabilities, than by emphasizing differences.
Second, the hours of service is really not what matters. It's the amount of intervention. In our work, we make this point over and over. Children should have the best quality intervention and should have the most they can get. The best quality intervention for young children means that it (a) is in the context where the child needs it; (b) promotes the child's engagement, independence, or social relationships; and (c) involves elaboration of the child's interest or engagement. They will get plenty of intervention because of (a): It should be woven throughout the fabric of the child's everyday life--or at least on those wefts where it's needed. Clearly, then, this intervention must come from the child's natural caregivers, who are usually parents and other caregivers (e.g., child care providers). Service is professional activity--the people who come in from outside the home or child care setting. It will no doubt be obvious that increasing the amount of time a professional shows up will have little effect on the quality or amount of intervention the child receives.
But perhaps it has some effect, and this is where the challenge of the child's disability might play a role. Providing many children with developmental support with the kind of incidental teaching I described above might not require a lot of professional time. If the child's behavior is under control, if the child's communication development is simply delayed, if the caregivers understand how to tweak their routines to help the child developmentally, and if the caregivers have the emotional and physical stamina to keep at it, a modest amount of support from a professional might be enough. "Enough" means that increases over a given amount of service would not result in a substantial increase in the amount of intervention.
I will soon post here guidelines for deciding on amounts of service. In the meantime, if you hear "Robin McWilliam says...," make sure it really is what I'm saying and not some convenient interpretation.
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· Where is the Family During Therapy?
Thursday, December 28, 2006 at 10:11 AM CST
In a broadcast of an often-repeated documentary about Treacher Collins syndrome, Juliana Wetmore's mother is driving Juliana to therapy. The first questions might be Why are they having to go to therapy rather than the therapists coming to the home? Did the family get a choice? But we'll move on to the more troubling questions. Juliana's mother says that Juliana likes speech therapy and physical therapy--they are like play time for her. Not everyone might agree, but I'm thinking this is sounding good so far. Juliana was still a toddler. But then her mother says that Juliana does really well in therapy but hasn't done those things for her. Red flags! We then see Juliana sitting at a little table across from a speech-language pathologist, who is getting her to sign and put puzzle pieces in the puzzle. It's good that she's getting functional communication: Juliana essentially has no mouth but does have intact use of her hands. A toddler sitting at a table might be developmentally weird, but in the grand scheme of things.... We see Juliana in physical therapy, which is focused on her walking--again, this is functional.
But here's the kicker: There's no sign of her mother anywhere during either therapy session. Putting 2 and 2 together...
(1) Julina's mother cannot get Juliana to do things that nonfamily members can +
(2) these things are done in a context that is only relevant for therapy (i.e., it is not where daily routines or significant events happen) +
(3) her mother is not present to learn how to elicit these behaviors in relevant contexts +
(4) Juliana is not old enough to be able to transfer the skills on her own (see No. 1 above as evidence).
(5) Therefore, this therapy is nonfunctional.Does it really matter that it is logically nonfunctional? After all, it is fun, and perhaps Juliana's mother feels that she has some control over her child's developmental progress because she takes her to therapy. But that's one of the problems. Her mother has been led to believe that Juliana is benefiting from this therapy. It is clear in the documentary that the parents do a lot for Juliana and her sister, which actually probably confuses the evaluation of the efficacy of therapy. Juliana is making progress, so everyone might be attributing this to the therapy. Research that Gloria Harbin and I have done on service utilization included this kind of attributional finding. My problem with leading parents to this attribution is that it is misleading them. Children of Juliana's age would be making progress because of the learning opportunities provided in the hundreds of interactions in her daily life, not because of isolated, decontextualized sessions with therapists, however fun and "functional" they might be. The reason we would know that the daily "incidental teaching" is working more than the therapy is that the mother has seen progress but has not seen Juliana do the things they are working on in therapy. One can only wonder how much better off Juliana would be if the well-meaning therapists concentrated on the mother rather than on Juliana.
More disturbing in the big picture is the fact that families see this otherwise inspiring documentary and get the wrong idea about how children learn and how therapy works.
On the other hand, an inspiring story appeared recently in the New York Times. The headline is "Parenting as Therapy for Child's Mental Disorders," by Benedict Carey. The report is about a successful parent education approach to treating children with ADHD. The family is central to therapy.
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· "Direct" versus "consulation"
Tuesday, December 12, 2006 at 10:08 PM CST
I have confused the field by teaching that the consultative model is effective, which has led to people putting "consultation" or "consultative" on the service sheets on IFSPs and IEPs. This has provoked reactions by some professionals and families alike that direct services are preferable to consultation. Clarification is needed.
When using an evidence-based, integrated approach to serving children in classroom programs, I recommend you define this as direct services. Such an approach would be individualized within routines or group activity (see www.IndividualizingInclusion.us), where visitors to the classroom (e.g., itinerant early interventionists or ECSE teachers or therapists) work in the classroom and do not pull children out. Their role is consultative in the sense that their major responsibility is to collaborate with the classroom staff to increase the likelihood that the staff will implement individualized interventions throughout the day. The visitor to the classroom is indeed a consultant. Yet, an integrated approach can be considered a direct service for two reasons: (a) the visitor to the classroom will have hands-on contact with children for the purpose of demonstration, and (b) an effective evidence-based approach should be reimbursed at a higher level than any other approach would be.
The problem has been that the terms "direct" and "consultative" have been applied to intensity instead of to model of service delivery, and direct services have been reimbursed at a higher rate. Therefore, "direct" is considered ongoing and frequent, and "consultative" is considered infrequent. However, integrated approaches should be frequent, to ensure that teachers have enough collaboration to help them be effective individualizers.
So, although the model is considered consultative, the bureaucratic designation should be direct, assuming this guidance is consistent with local or state definitions of these terms.
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· The RBI and Ecocultural Theory
Wednesday, November 29, 2006 at 8:48 AM CST
An anthropologist I highly respect, Tom Weisner (UCLA), and I have been engaged in parallel play. I have known his work for years, and we have met a couple of times. With Cindy Bernheimer, a former Chair of the DEC Research Committee, and other colleagues, Weisner has studied families from an ecocultural perspective. I strongly encourage you to read his work but especially
Weisner, T. S. (2002). Ecocultural understanding of children's developmental pathways. Human Development, 45, 275-281.The following points will show the parallels in our work.
1. Weisner describes ecocultural theory as being "based on the idea of locally rational action.... The 'local situation' consists of everyday routines and activities" (p. 277), and people use their schemas and what anthropologists call shared knowledge to make adaptations in their daily routines--adaptations that work for them and allow them to survive. These adaptations influence children's development.
2. Cultural pathways for children's development, according to Weisner, "are made up of everyday routines of life, and routines are made up of cultural activities (bedtime, playing video games, homework, watching TV..." (p. 276). Obviously, therefore, the Routines-Based Interview, which my colleagues and I developed in the 1980s (see McWilliam, 1992) is relevant for understanding children's cultural pathways.
3. Weisner points out that the single most important thing one can do to influence the development of an intact infant "would be to decide where on earth--in what human community--that infant is going to grow up" (p. 276). How families carry out their routines will vary individually but will have some commonalities within the region of the world, country, or city where they are situated. The cultural pathways for the infant are, to some extent, determined by how families in that place conduct their routines.
4. The behaviorist in me concurs strongly with Weisner's assertion that developmentalists should think about children "as already situated in some human community" (p. 277)--that would bring culture into developmental research. Context, also called the ecology, are vital for understanding children's development and behavior.
5. The Ecocultural Family Interview (EFI) was developed in the 1990s to collect data on children and families in their daily routines (Weisner, Bernheimer, & Coots, 1997), and the RBI was developed for more or less the same reason but for a clinical application--to give families a framework for selecting intervention goals. The EFI is "one way to enter children's and families' cultural pathways [by asking] parents and children directly about their daily routines and activities" (p. 277). Just like the RBI, "the EFI is an open-ended, semistructured conversation that covers a broad range of topics related to a family's daily routines" (p. 277). The latest published description of the RBI, for comparison, is in McWilliam, R. A. (2005). Assessing the resource needs of families in the context of early intervention. In M. J. Guralnick (Ed.), A developmental systems approach to early intervention (pp. 215-234). Baltimore, MD: Paul H. Brookes Publishing Co.Weisner, with the EFI, has had a similar experience to ours with the RBI: "Parents sometimes see this as a chance for a 'life review', or at least 'multiple-week review', encouraging them to reflect on what they are doing and where they are going" (p. 278). First, families have said about the RBI things like, "This was a life-changing experience." Second, the reflection on where they are going is consistent with the goal-planning purpose of the RBI.
6. Professionals who are used to assessment being entirely driven by the professional evaluator become concerned at the lack of apparent comprehensiveness of the RBI. Weisner points out that "there are no 'false negatives' in the EFI data" (p. 278), because the interviewer asks about important topics. That is also true in the RBI. That doesn't mean that every detail will be uncovered, but of course traditional structured assessment also covers only those items the developers thought to include on the test. But the RBI, like the EFI, is structured enough to ascertain the information for which the interview was designed. The EFI covers for each routine the script for the activity, feelings and motives, goals/values, people who are or should be involved, and the tasks to get done. The RBI covers for each routine what everyone is doing, what the child is doing, how the child is engaged, how independent the child is, what social-relationships behaviors the child displays, and how satisfied the parents are with the routine.
7. The EFI includes scores, which the RBI does only for satisfaction with home routines and goodness of fit of classroom routines. With the EFI, the interviewer scores items "describing the family routine and how it gets created and sustained" (p. 278). The UCLA researchers have attained reasonable interrater agreement on those scores. I have been contemplating a scoring system for the RBI, beyond the one per routine we currently have. It would add to the reliability of the longitudinal data.
8. The final serendipitous connection between Weisner's work and ours is about child engagement. Weisner writes, "Ecocultural theory is based on the idea that children's engagement in more sustainable routines and activities is good for children, and produces well-being, ...[which] consists of engaged participation in cultural activities deemed desirable by a cultural community... and the psychological experiences produced thereby" (p. 279). Our research on engagement has influenced the structure of the RBI, and what I have come to call "engagement theory" is central to our research, training, and service. It is consistent also with the World Health Organization's notion that "participation" (similar to engagement) is the critical dimension of successful functioning.
If our work and Weisner's are indeed as well connected as it appears, it is very gratifying for us to be in such worthy company. More importantly, from an epistemological, methodological, and conceptual standpoint, it is perhaps not coincidental that well-conceived practices that begin in ostensibly disconnected places, disciplines, and research groups will eventually find their "points of validation"--a term I'll use to claim that our RBI must be good if it's so similar to Weisner's EFI.
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· What the law says about where outcomes should come from
Wednesday, November 15, 2006 at 5:33 PM CST
IDEA does not specify where anticipated results or outcomes (i.e., individualized goals) on the IFSP should come from.I have been looking for guidance in the law about where individualized outcomes on the IFSP should come from. My reading of the statute provides no answer to this question. The outcomes do not have to come from the multidisciplinary assessment nor from the CPR. Unfortunately, however, links between the child assessment and services and between the family assessment and services are made. They should have made it clear that the outcomes come between assessment and services.
Here’s the part of 108-446 I’m referring to:
‘‘SEC. 636. INDIVIDUALIZED FAMILY SERVICE PLAN.
‘‘(a) ASSESSMENT AND PROGRAM DEVELOPMENT.—A statewide system described in section 633 shall provide, at a minimum, for each infant or toddler with a disability, and the infant’s or toddler’s family, to receive—
‘‘(1) a multidisciplinary assessment of the unique strengths and needs of the infant or toddler and the identification of services appropriate to meet such needs;
‘‘(2) a family-directed assessment of the resources, priorities, and concerns of the family and the identification of the
supports and services necessary to enhance the family’s capacity to meet the developmental needs of the infant or toddler; and
‘‘(3) a written individualized family service plan developed by a multidisciplinary team, including the parents, as required by subsection (e), including a description of the appropriate transition services for the infant or toddler.
‘‘(b) PERIODIC REVIEW.—The individualized family service plan shall be evaluated once a year and the family shall be provided a review of the plan at 6-month intervals (or more often where appropriate based on infant or toddler and family needs).
‘‘(c) PROMPTNESS AFTER ASSESSMENT.—The individualized family service plan shall be developed within a reasonable time after the assessment required by subsection (a)(1) is completed. With the parents’ consent, early intervention services may commence prior to the completion of the assessment.
‘‘(d) CONTENT OF PLAN.—The individualized family service plan shall be in writing and contain—
‘‘(1) a statement of the infant’s or toddler’s present levels of physical development, cognitive development, communication development, social or emotional development, and adaptive development, based on objective criteria;
‘‘(2) a statement of the family’s resources, priorities, and concerns relating to enhancing the development of the family’s infant or toddler with a disability;
‘‘(3) a statement of the measurable results or outcomes expected to be achieved for the infant or toddler and the family,
including pre-literacy and language skills, as developmentally appropriate for the child, and the criteria, procedures, and timelines used to determine the degree to which progress toward achieving the results or outcomes is being made and whether modifications or revisions of the results or outcomes or services are necessary;
‘‘(4) a statement of specific early intervention services based on peer-reviewed research, to the extent practicable, necessary to meet the unique needs of the infant or toddler and the family, including the frequency, intensity, and method of delivering services;
I’m looking at this now because I’m helping a number of states and programs figure out how to insert a routines-based needs assessment into their IFSP development process. In our legalistic, accountability-driven atmosphere, people want to know what’s required—what the law says. I knew the law didn’t mandate a functional needs assessment, but I wanted to make sure I knew about any actual or inferred links from the outcomes back to any earlier step (e.g., formal assessment for eligibility or the multidisciplinary assessment that all kids are offered). My recommendation to programs and states is, for children coming in under possible delay, either test them first and then do an RBI, which produces the outcomes (goals), or score a test during the RBI, if the child is highly likely to be delayed and if the test is pretty functional. For children coming in under established condition, just do an RBI, which produces information on current levels of functioning in the five domains, so you can count that as the multidisciplinary assessment (as long as you have indeed involved two people from different disciplines somewhere along the way) and it gives you the outcomes.
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· Three-tiered model applied to early intervention?
Friday, October 27, 2006 at 10:01 AM CDT
Could we incorporate prevention and response-to-intervention models into early intervention?
A doctoral student at the University of Wisconsin--Madison and I are writing a chapter for the next edition of Best Practices in School Psychology, in which we pose the possibility that the three-tier model should be applied to home visiting practices and possibly other practices in early intervention. The three-tier model is ubiquitous in school psychology now and is alluded to (perhaps even directly referred to) in IDEA 2004, with the response-to-intervention (RTI) language. The tiers are (1) universal or preventive services, (2) problem-focused services, and (3) highly specialized services. The expectation is that Level 1 is received by the vast majority of students, Level 2 by a small percentage of students (e.g., 5-15%), and Level 3 by a very small percentage (e.g., < 5%).
This doesn't fit perfectly into early intervention, because infants and toddlers don't get services unless something's wrong--or unless they are in child care. Preschoolers might be in some group care setting where they could receive preventive (AKA preventative) services. But let's focus this discussion on families receiving home-based early intervention, which is over 70% of the families in Part C. What's the universal intervention they receive?
Parenting in regular routines in the home and community. Where early intervention is different from services for school-aged children is that, without the specialized services (e.g., special education), school-aged children still get some service (i.e., regular education), whereas, without specialized services (i.e., early intervention), infants and toddlers get no service. But do they get nothing?
Of course not. They get parenting, which is the most effective intervention of all (see the NICHD Early Child Care research). But we cannot for legal and moral reasons not provide families with support when they are eligible for early intervention and want it. Therefore, my thought is that we enter the family's life at Level or Tier 2, but then the focus of that level of specialized services should be to support Level 1 interventions. This should address both child and family ultimate or distal outcomes. By that, I mean children should make progress in their functioning and families should increase their quality of life. In future posts, I'll elaborate on that connection, but the main point here is that the application of the three-tiered model in early intervention should possibly be to apply specialized services (Level 2) to enhance the effectiveness of interventions delivered by parents and other natural caregivers of the child (Level 1).
What about Level 3? Those are the few services that need to be employed to meet needs that this support-based approach cannot meet. Some of them will be child-level services, and some will be family-level services. The former would include medical or allied-health services such as orthopedics, audiology, or other medical specialties, but not OT, PT, and speech. Those developmental therapies would, like special instruction or early childhood special education, be used to enhance regular caregivers' capacity. There is no need for direct hands-on by the big four (OT, PT, SLP, ECSE). The family-level services that might be needed to supplement the support-based approach might be in the counseling arena, if the family needs professional-level counseling or therapy, or in the "social work" or "service coordination" arena, if the family needs more help in securing resources than even a good home visitor can manage.
Be careful, though. Home visitors who believe their job is purely related to children's performance might eschew family support and attempt to refer to Level 3 too early. This might be where the RTI approach should come in. Perhaps the system should require that some level of intervention be tried at Level 2, especially around the emotional needs of the family, before approving the use of Level 3. Families can, of course, privately gain access to any level of service they choose. To use this three-tier model effectively, Level 2 service providers need to be trained in the support-based approach, which would include training on when to refer and when not to.
The three-tier model is not a perfect fit for early intervention, but it does provide a framework for encouraging the use of natural family and community assets (Level 1), which is desperately needed because of the field's pernicious slide towards overspecialization.
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· DEC Conference
Sunday, October 22, 2006 at 10:49 PM CDT
The annual DEC conference in Little Rock was a good opportunity to catch up with old friends such as Don Bailey, Mary Beth Bruder, Gloria Harbin, Lee Ann Jung, Beth Rous, Sharon Walsh, and Barb Wolfe. I also had the chance to see briefly a number of other friends and former students. Here are some of my highlights from the conference, bearing in mind that I could be in only one place at a time, and had meetings during sessions.
· The keynote included a wise and pointed speech by my friend Mark Wolery on the topic of using recommending practices. It also included a hilarious movie assembled by Larry Edelman.
· Before the conference, Ann Turnbull ran the second meeting of the Family Community of Practice, which was the Family Summit at the first meeting in January. The focus of this meeting was how to get supports to families that they currently are not getting. A session later in the conference provided Ann the opportunity to tell others what is going on with this community of practice. In future entries, I will talk more about this issue and about two important innovations I have been thinking about: an application of the three-tier approach and learning from multisystemic therapy.
· A meeting with Heather Shrestha of Paul H. Brookes Publishing Company about a book Amy Casey and I have written on engagement. This book will come out in 2007.
· DEC is revising the Recommended Practices, and roundtables were held to get people's input into the issues addressed by each of the strands. My strand is "interdisciplinary models," which first needs to change its title. I doubt anyone realizes this is about working with teams comprised of people from different disciplines.
· Amy and I had two posters, one on the Engagement Classroom Study we are currently undertaking and one on the preliminary study we did on the Routines-Based Interview. Many people stopped by, and Amy handled the questions in her usual admirable way.
· I attended an introductory session by Robyn Ridgely on home visiting, which she handled deftly, including questions about whether talking to families about their outcomes was a fraudulent way of providing therapy.
The DEC conference is the best all-around forum for discussion of early intervention and early childhood special education. Most of the major players in the field serve their profession by going, there are plenty of sessions for practitioners, families can absorb much information and impart suggestions, and researchers continue to contribute.
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Friday, August 24, 2007
Welcome to Relocated Blog
This blog addresses issues about the provision of early intervention supports for infants and toddlers with disabilities and their families. The posts will deal with methods for implementing early intervention in a family-centered, normalizing, and evidence-based manner. You can read about the model at www.VanderbiltChildrens.com/earlyintervention. This blog takes off where an initial one, at www.earlyintervention.blogsource.com left off; that blogging service is shutting down.
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