ROUGHLY EDITED COPY
EHDI - STOPHER
‘Hindsight is 20/20. Are Families Getting the EI Services They Need?’
Casey Judd
March 9, 2015
2:30-3:00p ET
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[Next presentation].
> Hello, my name is Lisa Crawford. We only have 30 minutes, I have more slides than I will probably get through, but...I just want to explain up front, I'm going to go through some really quickly and others ones I want to hopefully have a little time at the end to have a little bit of group discussion and feedback.
I work for a state outreach office in Texas. I'm connected with the School for the Deaf, but we provide services across the state to families with children who are deaf or hard of hearing, birth to 21. I'm also, we help fund and coordinate the Guide By Your Side program in the state. And...I'm also on the board of our Texas chapter of Hands & Voices. And I'm a parent. My daughter is now 18, she just started college. When we got EI services, it was a long time ago, but I still remember it. And I just want to give you a little background on why I chose this topic. I do work with families quite often. Recently our state has been trying to improve some systems. We've been working on this issue on how to help families get into services, addressing loss to followup and then we're just finding out information about misunderstandings that parents may have about what early intervention is or why it might be needed. So...I just had a curiosity about this and decided to do a survey. So, it's a real brief survey, but I love kind of getting feedback from parents directly.
So...that's really the meat of what I'm going to talk about. Just curious who's in the audience today. How many I wrote this down so I wouldn't forget. Early intervention service coordinators? Any medical providers? Pediatricians? Audiologists. There we go. Deaf Ed educators? Okay...parents? Okay...EHDI program staff? Anybody else I forgot?
Okay, great. So...yeah, this is a little bit of information, I think it crosses the continuum in a lot of ways.
So...all right, so here's the learning objectives. You might have seen it in the abstract, but really, just trying to, with this short survey, trying to get at why parents might have been satisfied. Hopefully that's my title. Hindsight is 20/20. Parents that have gone through it, looking back, thinking about services they received. Did they understand them when they got them? Did they think they got what they needed? How would they rate them?
And looking at possible strategies to get parents enrolled in those services if they didn't understand them or possibly may have even refused services because of that.
I'm not going to spend a lot of time on this, I have four or five slides that touch on JCIH guidelines and principles. If you don't know what this document is, I assume probably most of you do, but if you don't, it's the Joint Committee on Infant Hearing. On the handout that should be going around, there's a link where you can download the document. It's on the American Academy of Pediatrics website and it's just a great, great resource, it talks about best practices and guidelines and principles related to EHDI programs and how those services should be delivered. How families should be given information and there's just all kinds of reasons why I love it, but I just pulled out a few things and I'm going to go over them really briefly. It kind of comes up later. I tried to pull out the things that were in the 2007 updated version. I actually have heard there's another update coming, maybe 2015, but...I, I haven't gotten any detailed information, but this is just something to watch out for.
So, I pulled out things related to early intervention services and communicating with families. So the document is much more complex and goes into all, other areas of EHDI, but some of the things I pulled out, these were highlighted updates in 2007. All families of infants with any degree of hearing loss should be eligible. There should be an easy pointed entry for services, which we struggle with in our huge state of Texas, but these are things that should happen, would be great if they did. Oftentimes we struggle with them.
Early intervention should be provided by professionals who have experience working with children with hearing loss and that doesn't always happen. That certainly didn't happen with us. It's kind of a funny story now, but when my child was identified, she was about nine months old and the first person who came to our home was someone experienced with blindness. We were like...why? But that was the closest they had, the closest they could get. We actually ended up moving, three months later, to get across the county line, because we found out there was a different program and different services, not too far away. That kind of stuff, unfortunately does ham. But it certainly is something we still struggle with sometimes and it's something to be aware of.
In terms of the natural environment, they did some clarification on that and in the last update, related to the services could be homebased or centerbased so they clarify that and then communication, this is key too. Many times they are given to the parent, but doesn't mean they understood it. It's an overwhelming time. That's something we often find is a misunderstood issue with parents, the hospital said we gave it to them, but the parent doesn't know there was actually a referral or a need to followup.
Parents should be provided with the appropriate followup information and I've I've got a couple highlighted in red. I think they're so important. Communicating with the family in an understandable format. Oftentimes families are given a brochure or they're, they've sat down with somebody for five minutes and somebody explained something to them. Did they understand it? Did anybody check to see? Did you ask them to repeat it back? Did you ask them if they had questions? Did you take the time to really make sure they understood what they were walking away with? And I think it, it takes repeated exposure, a lot of times for parents, I know for me, it certainly did, before I fully understood a lot of the information that was being shared.
Just transmitting information amongst systems, not just with the family, but that's very important, and then the last one here is that it's just key that families should be made aware of all the options related to communicate and hearing technologies, presented in an unbiassed manner and that informed family choice and desired outcomes should guide the decisionmaking process.
I could do a whole day on unbiassed manner and how you do that and how you share that information, but I think the one thing I want to just emphasize and involving Hands & Voices, of course, we train on this all the time, it isn't about filtering out information that you give to parents, and just giving them something that's very white wash with no one's opinion in it, it's helping the parent understand, there is some controversy out there, there's a lot of opinions out there, but you need to go to all different sources to get good information. And to empower them to be the ones to go out and do that.
So...how I would explain it is that you're really working towards bringing them in the direction to find out about all of these options, give them information as best you can, but the one thing I tell parents is the huge red flag, if there's one person in your life trying to be the expert in everything, runaway as fast as you can. Nobody can be that person. And you need to ask questions and meet people and go and meet a deaf and hard of hearing adult and talk to somebody who is in a signing program, in an oral program and visit those places and learn these things for yourself. There's just no one size fits all.
And two real quick, updated principles, focusing on the informed choice, shared decisionmaking and families having access to information about all the options and then, again, reemphasizing that services should be provided by somebody who is knowledgeable about childhood hearing loss.
Okay...now we're going to skip to the survey. I did pass out the questions that I actually included in the survey. It was very informal, not researchbased, just I like doing surveys and so, I threw together some questions. If you look at the questions, some of them are logicbased, meaning that however they answered one question, some other questions might have popped up. They didn't necessarily see each question.
I pulled out the main ones and summarized them here, but there's a few other ones, just so you'd have the list of questions I provided and on the back, there's that link to JCIH as well.
So, I did get 67 completed surveys, which I was pretty happy with. I used the national Hands & Voices network to get the survey out, we also used our Texas Hands & Voices network. For the most part, most of the parents filling these out were already connected. It's really hard to get to those parents that have never had services or still don't.
So...you know, we are kind of missing out a little bit there, but I really wanted to hear some, you know, on the ground stories from these parents and get their feelings about what their services look like and then, they're just parents with children of all ages. I didn't know how many responses I was going to get, but it worked out well. About a quarter of them had children that are birth to three now, who are in services, we could get their perspective and you can see about 20% was over the age of 12. So we had a pretty wide description of families.
Then I asked about the age of ID. I was just curious. Numbers don't look awful, but good 55% of them were identified at birth to six months, that did pretty good and we had some areas you know, numbers across the board and then I pulled out the three years or older. So we did have a little bit of a jump there, where 12 out of the 67 were actually identified after three years, which of course, then goes into whether or not they received early intervention services. So, those 12 did not, that's why it makes sense to connect.
But 55 and the 67 did receive services. So...then I got into asking them to rate their services. On whether they felt they got what they needed and just in general, how would they rate them? I kept it very broad and put some openended comment boxes in there for them to explain their ratings.
The majority of them rated their services excellent or above average. If they got good services, they went on and on and raved about their early intervention. People were using names, they were just going on and on. I'll summarize those comments in a minute and we did have some that were average to poor. So, I really wanted to pull those out as well to see why they rated it that way.
So, started out with those average or below ratings. Most of these are just direct quotes. A lot of these correlate to the JCIH principles. They weren't getting done, therefore, people weren't very satisfied with and so these are very directly related.
The first one is that no options were given. They were told what they would get. Delays to determine eligibility, which resulted in a delayed enrollment. Providers pushing their opinions, low expectations for the child. Personality conflicts, with the provider, service coordinators or providers that were unknowledgeable about deafness or hearing loss. Poor communication and followup. The parent was the one that had to contact EI in order to get services, instead of the other way around.
And then, favoritism shown towards specific ethnic backgrounds. We've got comments all over the board. And then I kind of pulled out these comments for those that rated their services above average or excellent. Comments about being paired with the deaf or hard of hearing adult who was trained in sky high. Services changed as appropriate. EI helped us understand that we're providers of therapy to our child. She did put that in quotes. I know over the years, we don't want parents to feel like they must be the teacher to their child, we want them to be a parent, but I do think the model has changed over time. When I was in services with my child, I think it took me, I didn't realize that, really, for quite awhile, I thought that provider is there to work with my child. I would watch and sit and learn on my own. Now I think that model is really changing to include that parent as much as possible.
So...I've seen that shift myself and I think it's really key that parents understand their part in it but aren't made to feel they have homework six hours a day and don't have time to be a mom.
And receiving assistance to connect to other families, that was a positive. It's great when early intervention providers can do that.
They were responsive, they'd answer questions at any time, they listened, that's a simple one. They provided a play group and they shared information without bias.
So, of the parents that said they didn't understand their services, I tried to pull out more about that. What didn't you understand about them? These were the comments. They didn't understand all the options. They weren't explained in full. They weren't given all the options and they weren't sure who paid for services. That's something we hear quite a bit. Parents can sometimes turn down services because they really don't understand who pays or how that works. And...oftentimes that's really something you have to spend some time on and work through with the parent and that, I know that looks different in every state too.
Then, more of that same question, what didn't you understand? It can be difficult to understand the service delivery, what are the agencies coming into my house, who's providing the therapies? Why are you here? What do you do? And I think that's really something that can be very overwhelming for families.
One family was excluded from connecting with other families. I don't know why they don't know why, but they put that down. It was assumed that they wanted mainstreaming and other options were not given so...I think, again, this is hindsight. They look back and they know, there were other options, but when did they find out about that? We don't know.
And then I wanted to kind of try to get into you know, now that there were things you understand you didn't understand, what would have helped you? What do you think would have helped you understand these services better? The comment was, somebody who had experience with children with hearing loss, you know, one story that I, that I've heard from a number of families could be an example of an audiologist who is used to working with adults and they come in with this child who has been diagnosed maybe with a mild loss, they're told, you know, it's mild, just wait and see what happens, there's no rush, we don't need to get the hearing aids. Nothing to fault the audiologists, but they don't have that experience with kids and they're making that assumption and I've heard that story quite a bit.
So that's just like one example that there's definitely something to be said to have that expertise working with these children. I mean, it's just something you really can't get around.
Having the options explained to them, that's something they'd like to see, would have like to see happen. Time helped, it was just too hard to grasp it all at once. You cannot give it to a family one time and expect them to fully internalize it all.
More explanation during the intake about what to expect. Time, most parents don't care what EI is until they need it and then it's a learning process. So, I think again, that repeated exposure over and over.
Someone who was knowledgeable about hearing loss and then she identified herself as a deaf mother and no one explained services to her. So obviously there might have been a language barrier there. Something that needed to be addressed and wasn't.
So, you've got the survey, I'm going to skip through this quickly. I want to get to the last two slides and get some comments from the audience. Case studies, we're doing something in our state right now, we have parent guides contacting families who are in the process and aren't advancing through and they're trying to identify the loss to followup and whether it's a loss to documentation or whether or not that family truly is not following up with an audiological appointment or whether that family's into early intervention services. I had a few anecdotal stories about that. I'll get to that in a second. Some families don't know if they're receiving services sometimes. They had someone come into the home for another reason. Maybe their child has other issues. Sometimes they don't know they're getting it or they just decide to go with a private, you know, services because they've run into walls and barriers and don't want to wait, but I think the knowledge that you could have both private and public is certainly helpful.