Advocating for your child’s needs

Diana Autin offers deafblindness guidance based on Educational Service Guidelines that were developed by New Jersey's Statewide Parent Advocacy Network

Aired Date: October 16, 2019


AUTIN: The law says that a child with disabilities has to be provided with a free, appropriate public education, otherwise fondly known as FAPE. So that’s a free appropriate public education. Not a free highest-quality-ever-envisioned public education. On the other hand, the law also says that IEPs must include research-based practices. So if we know that something works, then that should be addressed in the IEP.

So a free appropriate public education incorporates this concept of integrating into the IEP the things that we know work through research. And again, the Educational Services Guidelines reflect our best knowledge today about what works for students with deafblindness.

Now, there may be multiple ways to integrate those research-based practices. You don’t always have to have… when you’re talking about assistive technology, for example, not all assistive technology has to cost $10,000. It’s really getting the impact that you’re looking for, and not spending the most money. And again, in our experience, when you give districts information about cost-effective ways that they can actually have a more effective impact and provide a more appropriate public education to a child with deafblindness, they’re interested in doing that.

AUTIN: We often find children who have deafblindness being classified under other categories, like multiply disabled, or even cognitively impaired. And some of the children that we have worked with through our work with families of children with deafblindness were classified as being cognitively impaired, and they were not. They’re quite bright. They just had deafblindness, which wasn’t really recognized or identified by the district.

One of the reasons it’s really important for parents to make sure that their child is classified as being deafblind is because there are resources that come with having your child classified as being deafblind, including access to your state deafblind project. There’s information that is very targeted, like the Educational Services Guidelines, that parents will never know about if their child is classified as multiply disabled or some other disability.

NARRATOR: We see the cover of a brochure titled, “Parent Center Guide to Deafblindness: Educational Service Guidelines. Helping Families of Children and Youth with Deaf-Blindness in the Evaluation, IEP, and Transition to Adult Life Processes.” It is one of a number of resources produced by Perkins and the New Jersey Statewide Parent Advocacy Network.

Next we hear from Sherdina, a mother who used the guide to help access resources for her deafblind son.

SHERDINA: Do not allow your child to be classified as multiple handicap. Make sure your child is classified as deafblind so that they will be able to get the resources that they need to help them to achieve.

Once I got with the Deafblind Project, it was like a godsend for us. The education was there, the resources were there, help with the IEPs were there.

AUTIN: One of the things that is very useful about these tools is that they give parents information about the kinds of services that are appropriate for children with deafblindness– the kinds of instructional services, the kinds of related services, the types of people who should be providing those services, The kinds of qualifications and certifications those people should have. So families who know a lot about their child, but don’t have a lot of expertise about the professions that are involved with children with deafblindness have a starting place.

And again, everything we talk about in each one of those tools is directly tied back to the Educational Services Guidelines, where parents and professionals can get more detailed information relevant to that particular topic, that particular area of expertise, that related service. So it’s a great starting point for parents and for everybody else on the IEP team.

NARRATOR: We see the cover of a booklet titled, “The Evaluation of Children with Deaf-Blindness: A Parent Mini-Guide.” And then we hear once more from Sherdina.

SHERDINA: Our children, having them assessed is very complex. But a lot of the skill base, the resources, is in that material, whereas a lot of our local school district and a lot of our projects that are school based, they do not get to assess children on a regular base that are deafblind. So that material is just so valuable, and the parents need to know that it’s there.

AUTIN: Another thing that we have found to be effective is kind of making sure that you walk through every step of that process, that the parents don’t go into the meeting immediately saying, “We want an intervener,” or immediately saying, “We want our child to have a full-time person who’s going to be signing.” But to really walk in and say, “Let’s start with the evaluation. Let’s start with strengths and needs.”

And the law requires the district to provide services and to have goals and objectives for every identified need. So let’s start with those needs, those strengths and needs. What are the goals and objectives? Make sure we have at least one set for each need. And then what are the services? And we actually tell parents to go through those evaluations with markers. So you use a green marker, and you do all the strengths. You use a red marker to do all the needs. And so when you go into that meeting, you have right there at hand a quick and easy way to make sure that you’re talking about all the strengths and needs upon which the rest of the IEP is built.

If you start from the beginning and don’t let the district jump you to placement, it’s more likely that you’re going to end up where you need to end up for your child.

 AUTIN: One of the best resources that exists is the state Deafblind Project. State Deafblind Projects don’t have the funds to go to every IEP meeting, but they do have a lot of information and expertise.

NARRATOR: We now hear from Jessica, a parent who has taken advantage of the knowledge, expertise and resources through the state’s Deafblind Project while working with her son’s IEP team, as well as working directly with the state’s Parent Advocacy Services.

JESSICA: I cannot stress strongly enough what an important part of the IEP an advocate is. Not only is the support there for you, but the backup of learning all the laws and everything that you need to know to be prepared for the IEP meeting.

AUTIN: One of the best things that the parent can do is suggest bringing in a representative from the state Deafblind Project. Doesn’t have to be in person. It can be by conference call. It can even be by a letter, where someone from the state Deafblind Project would summarize the kinds of things that the district could do that would be both effective and cost effective and meet this child’s needs more effectively.

And we have been able to work with families to get that to happen in many cases. If a district is unreasonably denying a request, if they’re unreasonably saying no to something that we know is evidence based, then the parent does have options. The parent can request mediation and have someone come in and help mediate that conversation. The parents can also go to a hearing.

However, usually if the parent is able to demonstrate that there is some good evidence behind the kinds of things they’re recommending, or asking for, the district is going to be interested in implementing that, because they know that that’s the requirement that’s placed on them.

NARRATOR: Again, we hear from Jessica.

JESSICA: They’re there, they know the law. And the school district also views you differently when you come to an IEP with an advocate. So I think there’s more respect when you bring an advocate than when you show up alone.

AUTIN: We have worked intensively with families of children with deafblindness for about the last eight years in New Jersey through some collaboration with Perkins School and the National Deafblind Technical Assistance Agency, as well as our state Deafblind Project. And our experience before the creation of these tools was that many families really had a limited role in their child’s IEP.

NARRATOR: We see the cover of a booklet titled, “IEP Meeting Checklist for Parents of Children with Deaf-Blindness.” The cover opens, revealing the first of three pages of the checklist.

Next, we hear from Suzanne, a mother who has three children who are deafblind, each of whom has an IEP.

SUZANNE: If you don’t know how to do an IEP, if you’ve never been in one, it’s your first, take it with you. Check the boxes. Go through it step by step from, you know, current levels to future planning, so on and so forth. Go through it step by step. It’s invaluable.

AUTIN: Many families were very depressed and had low expectations for their child with deafblindness, because they really didn’t know what was available, and they didn’t know what was possible. Since the development of these tools, which are available in English and Spanish, the experience has been very different.

NARRATOR: We see side by side two brochures titled, “Developing an Effective IEP for Children with Deaf-Blindness: A Parent Mini-Guide.” One is printed in English, the other in Spanish.

AUTIN: Families are much more knowledgeable. They feel much more empowered. They feel more optimistic. They feel like they are on a level playing field, and maybe even a little bit higher than a level playing field when they walk into the IEP meeting. They have the power of the evidence-based, research-based practices behind them. They have the tools that they can share with the team, that tell the team where they can go for more information.

NARRATOR: Jessica now recounts her experience with sharing the material with her son’s IEP team.

JESSICA: I have shared the companion materials and the guidelines with all of our service providers. I actually brought it to the IEP and showed everyone, passed it out for our next IEP.

All of the resources offered by the Deafblind Project have made my family closer, calmer, and helped me greatly.

AUTIN: And we are seeing much better IEPs, IEPs that have higher expectations and better levels of service, more inclusive IEPs, IEPs where parents are being taught sign language so they can communicate with their children, IEPs that have positive behavior support plans instead of the use of restraints or aversives for children with deafblindness who may be acting out because nobody’s communicating with them appropriately. And we’re seeing much happier children with deafblindess and their families.

AUTIN: Well, social and emotional development is something that’s supposed to be part of the IEP for students with disabilities. And so it shouldn’t be difficult to have services aimed at developing those social relationship skills included in an IEP. Sometimes you have to be able to build on that evaluation, what the evaluation shows are the needs of the student. Sometimes you have to bring in what’s the best practices, the evidence base. And there’s a lot of information about social and emotional development in the Educational Services Guidelines. So that’s a great place to get that support.

There’s also the requirement that students with disabilities have the opportunity to interact with their nondisabled peers for this very reason; to be able to develop those relationships, not just to have friends, but also the students without disabilities are going to be the employers, landlords, the people who run the library. You know, they’re going to be the adults in the community that are running a lot of the community service systems and doing the things that students with disabilities are going to have to be able to access as adults.

So even students who may be, again, in out-of district placements, have the right to have opportunities to interact with nondisabled peers. So we will encourage parents to have their child brought back into the home district to participate in extracurricular activities– you know, nonacademic activities, rec programs. To have summer programs.

NARRATOR: Next we hear from Michelle, a mother whose son is deafblind. She recounts the value of the Educational Service Guidelines and the companion materials when seeking appropriate services for her son.

MICHELLE: Just knowing your rights and making people aware that you know your rights is such a powerful tool. Because it doesn’t mean everything has to be an argument or a threat. But you do have to be informed.

AUTIN: Students with deafblindness are likely to be eligible for extended school year services. Those don’t always have to be provided in a special education classroom. You can have extended school year services that are provided in a summer program that’s for all children. And you can have supports to help the student with deafblindness develop those relationships and friendships and those social skills.

Sometimes it does take a little bit more advocacy to make it happen, but again, that IEP is supposed to incorporate those evidence-based practices, and these are evidence-based practices that are essential for students with deafblindness.

AUTIN: One of the things we talk about in the resources is that parents of children with deafblindness in particular should be thinking about transition from the very first time they’re thinking about their child’s services. This is not a disability that’s easy to have a good transition to adulthood. So you really have to be thinking about what your hopes and dreams are for your child with deafblindness. In particular, really need to think about the whole person that their child is going to be.

NARRATOR: We see the cover of a booklet titled, “Transition to Adult Life for Youth with Deaf-Blindess: A Parent Mini-Guide.”

Suzanne, who is the mother of three children who are deafblind, shares her thoughts about long-term goals for the IEP team.

SUZANNE: Did you write a goal for your child? Do you have goals for them? What are the future plans? And if you haven’t done that kind of homework going throughout the year, the teacher doesn’t really have a rapport with you, I don’t know that the respect level is the same there. I think it should be, but it may not necessarily be. So definitely do your homework prior to the IEP meeting.

AUTIN: And make sure that transition plan has goals and objectives and services for all of those components of adult life. It’s very important for children with deafblindness to be out in the community. There needs to be information in the IEP about, how is this child going to learn how to navigate their community, to get from home to work, or home to school, or home to the voting booth? Is this young person with deafblindness going to be able to advocate for themselves?

NARRATOR: Sherdina, whose son is deafblind, discusses the need for early transition planning.

SHERDINA: The transition for our children cannot start at 14, 16. It has to start when they’re three, four, five. Those resources, and that was the information from Perkins that I felt was just eye-openers for me.

AUTIN: It’s based on the student’s strengths and needs. I mean, a transition plan, like an IEP, is individualized. I mean, the transition plan is part of that IEP, so it has to be individualized. It has to be based on the student’s strengths and needs.

In addition, though, the transition plan is based on… you know, you talk about the IEP having to incorporate the parents’ hopes and dreams for their child. The transition plan has to incorporate the student’s own hopes and dreams. What is it the student wants to be doing as an adult? What do they want to learn? What do they want to earn? Where do they want to live? What kind of life do they want to have? How do they want to be engaged in their community? Do they want to be a community volunteer? Do they want to be a disability activist? You know, what do they want to do? What do they see for themselves? And the transition plan is where you have to start incorporating what the student wants for their own life into that IEP.

We really encourage parents to include their children with disabilities in the IEP process at a very young age, so that by the time you get to the transition IEP, you can have the student with disabilities really making a lot of the decisions for themselves in the IEP process. And, in fact, once a child turns 18, unless the parent has guardianship, that student is making their own IEP decisions. They’re the ones who are making the decisions with the team about what their IEP is going to look like for the next three years.

So it’s really important to start your child early so that they are prepared to make those decisions when they come of age and are the decision makers for their own future.

NARRATOR: In a photograph, a young man who is deafblind is shown at his job, a plant nursery and farm stand.

AUTIN: So we need to build in self advocacy skill development for students with deafblindness. They have to learn how to be able to tell people their needs, and also tell people what they can do, so that they are not perceived as being a poor, unfortunate, hapless victim, but are really seen as contributing members of society.


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