ROUGHLY EDITED COPY
2017 EHDI CONFERENCE
HANOVER B
ADVOCACY EVERY DAY:
PARENTS OF DEAF AND HARD OF HEARING CHILDREN
February 28, 2017, 10:10 A.M.
REMOTE CART CAPTIONING PROVIDED BY:
ALTERNATIVE COMMUNICATION SERVICES, LLC
P.O. BOX 278
LOMBARD, IL 60148
***
This is being provided in a rough-draft format. Remote CART, Communication Access Realtime Translation, is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
***
SUSAN FINGERLE: All right, I think I'm going to getstarted. It's 10:10. If people come in, that will be fine.
First thing, I wanted to note that Lisa Weiss, who is myco-presenter, couldn't be here today. At the last minute, shewon't able to travel because of work and home. And I didn'tchange the slides. We developed the presentation together, so Ididn't change the slides, and I'll continue to speak at times inthe "we," and it's because we planned to do this together.
Lisa and I are both parents of children who are Deaf orhard of hearing and we're both attorneys. We were friends andco-workers before we had our kids. Which is a coincidence. I'mthe parent of two boys. My older son is 12, and he's hard ofhearing. I worked as -- I have worked as a special ed attorneysince 2002, and my professional experience certainly informsthis presentation, which is going to be about how consensusbuilding and conflict resolution and education are importantparts of advocacy for parents. Seven months ago, I moved fromNew York to Alabama with my family, and I've had plenty ofopportunities since then to use my own advocacy skills.
And it's interesting to be in one place for so long and youget to know everyone and they know your kid, and then to be in anew place made me really think about how I communicate with thepeople who work with my son.
So parents of Deaf and hard of hearing childrencontinuously advocate for their kids, and the goals of thispresentation are to help develop parent advocacy skills, toreview parent roles and IEP teams and the CPSC and to supportpositive relationships with school districts.
Parents are advocates for their children from the timetheir born. Advocacy is the after-process of supporting a causeor proposal and this is something that we do every day. Wecontinuously advocate for our children and educate people aboutour children. We do this at home, in our own families, atschool. We do this in social situations, at the doctor, whichis something I've heard a lot of people talking about at theconference this year. At sports, at extracurricular activities,and we teach our children to do the same as they're gettingolder and our roles change and their needs change.
I think parents have to come to the table fully prepared toparticipate, and really act as advocates for their own childrenbecause no one else knows your child as well as you do.
Lots of people are on your child's team. You know, in yourcommunity, at home, at school, and all the places where thoseintersect. But at the end of the day, knowledge and skills arethe keys to building good relationships, and working with theteams and resolving the inevitable or possible conflicts thatappear down the road.
Don't get me wrong. I mean, everyone is going to havedisagreements with the people who work with their children --with IEP teams, with school districts, sometimes with medicalprofessionals. I've had disagreements, and in my work, I'veseen tons and tons and tons of disagreement. I worked for aschool district in a large urban setting and there were 180,000students with disabilities in the school district where Iworked. There were lots of disagreements and lots of dueprocess.
But in the end of the day, very few end up with dueprocess, and sometimes people serve your kids for 12 yearsstraight and it's important to have good relationships andconsensus and educate people about your child.
Parents work every day to ensure that their children haveaccess to the most level playing field possible for that child. For your family. I mean, access is a multi-facetted thing. I'mtalking about access to modes of communication chosen by yourfamily or by your child when they are able to do so. Access toeducation, to technology, to their own identity, to communityroles, social skills, relationships, and in, you know, the hard,you know, kind of nuts-and-bolts parts of school and IEPs.
And parents have to ensure that their children's needs arebeing met while they're building good relationships, which isn'talways easy.
But critical -- a critical and profound aspect of disputeresolution is the idea that, from disagreements and conflict,change can happen, positive change. And understanding thatagreement can lie behind differences and to work with the peopleat the table to understanding the change between difference andinterest will sometimes facilitate to getting to the agreementsand to consensus.
Consensus isn't necessarily, you know, a unanimous vote or100% agreement. It's developing a plan that everyone can livewith when move forward with. And I think it happens a lot ingood IEP teams and good IEP meetings and the idea offacilitation, which is a growing and really positive part of theIEP process, is certainly built on consensus or founded onconsensus-building.
An example -- a short example I'll share is that Lisa, whoI usually present with, had her -- her son is Deaf and hasbilateral implants and they decided to cue with him. He wasoral, but he needed additional input to support language andcommunication, and they chose to cue him. They lived in a placewhere no one else cued, so they had to find people to cue, findpeople to teach the school districts to cue, the turning fiveprocess and the transition from preschool to kindergarten, andthe school district was resistant. And they had to teach a lotof people and get a lot of people on board and it took a reallylong time. It took a few years and then they moved and had torestart the whole thing in a new state.
But at the end, she did a lot of work. She brought a lotof evidence. She taught people how to cue. And the effect thatit was having on Max was really evident to everyone, and overtime, the school district got on board and really supportedthem. It took a long time, and it was a conversation that wenton over many IEP meetings, and it was certainly bounced low tothe road. Max is in high school and doesn't cue at schoolanymore, but they still cue at home. He uses CART and he's 14years old now. When I think about consensus building, a reallyclear example of the complexities of the communication and thepatience by everyone involved, that really can produce apositive result. The school district changed by miles overtime. But it required active participation, an open mindedness,and creative thinking and trust in a situation where therealways isn't trust or reasons to trust everyone.
So I think education is one of the places where there is alot of tension for parents surrounding IEP meetings and schoolin general. There's a natural imbalance of power, and I thinkthat -- despite what I did professionally, it was really hardfor me to sit in my own kid's IEP meeting. It's gotten easier,but it wasn't easy in the beginning, and it's not always easy. Deafness and being hard of hearing are low incidencedisabilities, and parents can't always rely on therecommendations of school districts to fully understand theirchildren's needs. Most school districts don't have experts onstaff who understand Deaf children or the needs of Deafchildren. My school district in New York didn't. My schooldistrict where I live now does. But it can be -- and I'm sureit's different in all of your school districts. When we livedin New York, I brought the people from the Deaf school where heattended to the IEP meetings for years because they understoodhim and I had them continue to evaluate them, but the schooldistrict didn't have anyone on staff. They learned over time,but in the beginning they didn't, and I think it became reallyclear to me then when I left, or we left, the Deaf school, orthe School for the Deaf that he attended and were out in ourschool district that we really needed to bring a lot ofinformation to them. And they were well-intentioned. And Ithink parents really have to go to IEP meetings ready to be fullmembers of the team. Their role as advocates or -- for theirchildren is critical, and the IDEA and your state regulationsgive you that role, and you should -- to the extent you can,really take advantage of your position and use your voice toinform what happens in school.
Schools -- the services are provided in schools indifferent ways for different kids. By IEP plans. And IEPprograms, and 504 plans through early intervention family plans,and through the ADA, which has gotten a lot of news this weekbecause of the case regarding the guide dog that just came fromthe Supreme Court.
Parents should be familiar with your state's IEP form. It's on the website. Parents need to be understanding of allthe forms that it needs, and your school district either givesyou a paper copy of or sends you a link at this point andunderstand what your rights are in terms of your child's rights,in terms of your state's regulations.
I think most important thing that parents can do for -- inparticipating in IEPs is just prepare. Should have an opinionand inform yourself as much as possible. Review the current IEPand think about what the services look like for the child in thecourse of the school day. Consider your child's opinion. Askfor a draft of the IEP if you think it would help you. Schooldistricts generally have a draft going in whatever system theyuse to create IEPs, and you could ask for a draft, you know, akind of the bare-bones of it might be there, the levels mightalready be there, because they're taking them from their ownevaluations, which they should have shared with you in advance.
If you have assessments that you want to share with them,do so in advance so they have a chance to think about them andyou can discuss them at the meeting. And remember that eachyear is a new year. So whatever happened last year for yourchild in their program, or at the IEP meeting, is irrelevantgoing forward, to some degree. Children's needs change overtime, and certainly, as they age, you know, the differencebetween, say, pull-out services and push-in services becomesreally important for our children. By third or fourth grade,most kids don't want to be pulled out of anything anymore. Theywant to be under the radar. They don't want to leave. And theydon't want to miss things.
My son's school was doing robotics last year, and there wasno way anybody was taking him out of anything. And it became apoint of contention because he had something scheduled then andwe had to change his program because he didn't want to miss whatwas going on in school and it was exciting and it wasn't justrobotics, but it was everything, by the age of 10 or 11.
Make an outline so you have your notes ready, so you canremember all the things you want to say, and check them off asyou get them up. And I think having the outline follow thesections of the IEP for the needs that your child has, yourpoint-by-point creates a way that you can get more in the draftof the IEP, and I write over it, so when we get to that part, Iremember all the things I wanted to say.
At the meeting, I think our role as parents is to paint apicture of your child. I know that everyone talks about that. When your child is leaving preschool and entering kindergarten,but I think you have to be prepared to do it every year and notjust for the people who don't know your child, is that bigtransition for some children, but every year, because the peopleat the table are going to be different and they don't know whatyour child does outside of school and what you do as a familyand what your family goals are and what you're working on athome.
Discuss, when they talk about your child's present levelsof performance -- you're a part of that conversation. I've beenin IEP meetings where the team goes through their stuff, likethe educational stuff, the reports, the present level, and mom,do you have anything you want to add? And it will say on theIEP that, mom says her kid likes to play video games. Andthat's fine, but there's more things outside of school that'sreally relevant to IEPs. All children like to play video games.
Help to identify your child's strengths and needs. Helpdraft the goals. You should be at the table. IEP meetingsdon't have a time limit. They might schedule 45 minutes duringthe teacher's break, but if you don't get through everything youwant to get through, the meeting isn't over until you'veparticipated in all of it, and all of your success are answered. If you have to come back another day, so be it. It's not a45-minute chunk of time that they scheduled because the nextparent is waiting in the hallway. I've waited outside theprincipal's office for a long time while they finished othermeetings, and I think everyone should have all the time theyneed.
And I think that there are really substantial benefits thatI've seen in my personal life, and also in my professional work,of informally resolving conflicts. It builds good relationshipsthat you're going to have for a long time. And at the heart ofall these agreements is a child. I think the last thing I everwanted to do was fight with the people who serve my kid. We allcould if we had to, but at the end of the day, it's about yourchild, and you're leaving him all day at school with thesepeople, and it's beneficial for all involved to have goodrelationships that are mutually respectful.
In addition, due process is very costly, and really, Ithink has a real drain, is a drain on resources and a drain onthe relationships involved. It's hard to sit down at the tableagain without bad feelings after you've been through that.
So I think those are the end of my slides. If you have anyquestions, please -- we have a little bit of time. Actually I'mgoing to give you this microphone because --
AUDIENCE MEMBER: My comment is, I live in Maryland,where -- I think we have a pretty decent Deaf and hard ofhearing program. But my biggest battle is the fight for theservices that you think are common, and you're fighting withpeople who went to training, educated, on Deaf Studies andeverything, and then you're like, but there's this common stuff,like recently, for about the last year or so. There are 33 Deafchildren in the school. It's a regular, comprehensive school,and just two weeks ago they started interpreting announcements,for the school, where they have two full-time interpreters inthe school. Many people would think that would just be ano-brainer. And I had to fight for almost a year. And theydidn't start it until over last month I filed a state complaintand all of a sudden it appears out of nowhere.
SUSAN FINGERLE: Good for you. I think that happens alot, unfortunately. I think a lot of times, from my personalexperience, school districts definitely pay attention at thatpoint. Oftentimes it takes a filing that gets their attention. It often doesn't go any further. But good for you. It isinteresting that a school wouldn't have interpretive servicesfor announcements for a school, like the school you justdescribed where your child goes. And that's great. Good foryou. Any other questions or comments?
The one is my son and the other is Lisa's son. I just likethat picture. They're bigger now.
AUDIENCE MEMBER: I have more of a comment than aquestion, but every state has a Parent Training InformationCenter and they can help people understand those safeguards, andI just wanted to put that out there.
SUSAN FINGERLE: Thanks very much. That's interesting,moving from a large state that was super-populous and it washard to find information, even when my son was a baby, reallyhard to find information, and I had Lisa and her family, becauseMax is two years older than my son, who had just kind of gonethrough all of this. But for that, I really felt I would havebeen on my own. And one of the things that I think isinteresting is, outside of New York, the access to informationand to services and to connecting with people is a lot easier. Some are remarkable, coming from Wisconsin. So thank you forsharing that.
AUDIENCE MEMBER: I was just wondering if and when yourson -- does he attend his own IEP meetings?
SUSAN FINGERLE: Yes, this last year. He was answering(indistinguishable) when he started attending his own IEPmeetings, and -- actually, my school district said, oh, we don'tusually have children attend their IEP meetings until highschool, and I said, well, he's ready, and I think he hassomething to say. And he didn't come for the whole meeting. Hecame -- we had the beginning of the meeting, and probablytalked -- to the point where we talked about him, and he talkedabout what worked for him and what didn't work for him, and itwas really beneficial, and I think we all learned something. And he did this year at his new school as well in a similar way. He's in sixth grade now and kind of participated the same way.