by Erin Sweeten
Last week, we spoke with PVMOM Jill Hanon, who coordinates our Special Needs Forum, about getting help for struggling babies and toddlers. You can find Part One here. This week, we pick up where we left off: what should you do when your children still have delays but are older than age 3?
Erin: My kids are about to age out of AZEIP. What happens next?
Jill: Your service coordinator is supposed to start the process with you. We had a ton of glitches because our service coordinator was kind of non-existent. Unfortunately both AZEIP and DDD have a lot of turnover. I can’t even tell you how many coordinators I’ve had in the last five years. I’ve lost track. We’re on almost a year now with our current one and I’m like, “Please, DDD just hold onto him.” For the transfer to DDD, you have some forms and things to fill out. You apply to Altec. It’s the long-term care health approval part of it. And there is a financial approval piece when you leave AZEIP. DDD looks at yours and the children’s income. DDD goes from age 3 through 18. Be prepared for a lot of red tape. Jump through the hoops, fill out the forms, and keep copious notes of who you talk to when. Keep track of everything.
Erin: So, if you qualify for DDD at age three, are you good until age eighteen, or do your kids have to be re-evaluated?
Jill: They are evaluated at ages three and six. Age six, because they age out of some of the programs. Although there can be exceptions. Because my son Jack repeated kindergarten, he actually got his services extended. His brother Charlie didn’t. Same age, same qualifications, but because one stayed in kinder and one didn’t, they had different results.
Erin: What are the fees associated with DDD? Is it a sliding scale?
Jill: It is a sliding scale. What they do is, first they submit it to your private insurance. What private insurance doesn’t cover, DDD is supposed to cover. There may be a co-pay, depending on what you qualified for. We haven’t had a ton of out-of-pocket. Most of our expenses were because the transition between AZEIP and DDD got messed up. I had to reapply twice because they literally lost our paperwork.
Erin: If I missed the window for AZEIP and my child is over age three, can I still apply for evaluations and services?
Jill: Yes. You just start the process with DDD. You go to the Department of Economic Security website, and then there’s a page for disabilities. The website is a little difficult to navigate, but there is tons of good information on there. It’s a good resource. Here’s the link: https://des.az.gov/services/disabilities/developmental-disabilities. The application is basically the same thing. You make an inquiry, have an evaluation. However, it’s going to be harder to qualify for services, especially if you don’t have a diagnosis of some sort. That doesn’t mean autism specifically, but if you just have a documented developmental delay, that’s going to help the situation. They will look at scrips from your doctor. You have to turn all that stuff in.
Erin: If my kids qualify for services, what happens next?
Jill: First, you have to get a prescription from your pediatrician for therapy services. For example, if I’m approved for speech therapy services one hour a week, the doctor needs to write that scrip exactly that way and send it to DDD. Then DDD sends it to the provider.
Erin: Let’s talk about developmental preschool. How does that fit in?
Jill: We participated in Sun Kids, which is the developmental preschool program in the Paradise Valley School District. Scottsdale also has one called the Panda Program. I believe other districts have them too, though I don’t know them by name. It is part of the public school system. If you’re interested, you contact the district office in your area. Then you get tested to see if you qualify. It’s essentially a skills and cognitive test. It seems kind of silly at three years 10 months, which I believe is the qualifying age. You have to be at least that age to test for preschool. You can stay in the school for one or two years.
Erin: How early do I need to start working on this before the school year starts?
Jill: My boys are August birthdays. So school started before they were allowed to go. But I think I got the process started in February or March and they were evaluated in May.
Erin: If one of my children has developmental delays and the other one doesn’t, can they still go to the same school?
Jill: Yes. Developmental classrooms all have what they call “peer models.” If your child doesn’t have delays, he or she can be evaluated to be a peer model. There is a tuition cost to being a peer model, while there is no cost for the developmental preschool if your child qualifies with developmental delays. It’s either a morning or an afternoon program, usually about two and a half hours. Most districts have busing available.
Erin: Does a developmental preschool have an IEP (Individualized Educational Program) for each child?
Jill: Yes, you go through the whole process. The child goes through an evaluation, then you will meet, and write goals, and there will be reviews of those goals each year or more often.
Erin: When my kids go into kindergarten, does the IEP follow them, or do they have to do it all over again?
Jill: Yes. It follows them. But let’s back up. When they get tested for developmental preschool, that test lasts for three years. They might re-evaluate them before kindergarten, and then that will last for three years. Basically, they have to go through the whole process every three years. The testing is called a “MET (Multidisciplinary Evaluation Team) Report.” It differs by age. Some of it is a lot of questions that you, the parent, have to fill out. And some of it is actual testing with the kids—looking at pictures, playing games, things like that. One really important thing to note is that if your child has qualified for developmental preschool, when that child turns five, they HAVE to start kindergarten. If you pull them out, you have to put them somewhere else on your own dime. Then when you go back to public school you have to go through the whole IEP process again. My sons turned five right before the deadline, and one was ready for kindergarten and one wasn’t. But we wanted to stay in the district and keep their IEPs, so we had to put them in kindergarten. And one ended up repeating.
Erin: Thanks for all the great info on transferring or starting services for older children! We'll be back next week with all your advice on how to navigate and advocate for your special needs children.
As a parent, you are not the paranoid type, but you’ve been wondering about one or more of your multiples lately. They are not hitting milestones on time. While your pediatrician assures you that every child develops in their own way, you suspect there’s more to it. You may be right. Multiples born prematurely or with low birth weight are more likely than singletons to experience developmental delays. For a variety of additional reasons, twins are more likely to have language delays than singletons. It might be time for some intervention.
This month on the blog, I interview the ever-gracious PVMOM Jill Hanon, who moderates our special needs forum on Facebook and is mom to two seven-year-old boys. Both of them qualified for interventions through AZEIP, a state program that provides support to toddlers. Jill walked me through the steps of finding support for kids with developmental delays. Because she is such an amazing fount of knowledge and advice and I couldn’t bear to cut any of it out, this will be a four-part blog, with a new part released each week. The first installment covers AZEIP. Part two delves into services and school support for older kids. In part three, we’ll learn the art of gracious advocacy. Part four dives into the deep waters of the emotions and relational challenges of parenting special needs kids. No matter where you are on your special needs parenting journey, there’s support available. Let’s start at the beginning.
Erin: What should I do if I notice delays in my young kids?
Jill: You can do what I did. I self-referred to AZEIP on their website when my boys were 18 months old. Your pediatrician or other people can also refer you. It took about two weeks to hear back.
Erin: So you can fill out some kind of screener on the website?
Jill: Yes. The program is Arizona Early Intervention Program. It’s a department of the Department of Economic Security. Here’s the link: https://extranet.azdes.gov/azeip/azeipref/Forms/Categories.aspx
Erin: AZEIP calls me back and schedules an evaluation. What can I expect from the evaluation?
Jill: Depending on what your concern is, they will send someone out to evaluate that specific concern. They may or may not notice other things. In our case, we were concerned about a speech delay. They send out a speech therapist and a coordinator. The important thing to note is that they ask a lot of questions: “Does your child do this? At what age did your child do that?” If your child does it, but not often or not all the time, your answer is, “No.” Because they have a scale and they are evaluating your child and if you say, “Yes,” but it’s not all the time, then they should not be evaluated as having accomplished that skill. That’s why it’s important to say no. If they’ve said “Mom” once and never again, that’s not the same as saying it all the time. Our impulse as parents is to brag on our kids and put them in the best light, but that’s not what you want to do in the evaluation. You want a really good representation of what they are actually doing.
Erin: What ages of children are eligible for this program?
Jill: I believe it’s birth through three for AZEIP. After three years old, they are transferred to the Department of Developmental Disabilities (DDD).
Erin: What costs are associated with AZEIP?
Jill: It is fully covered. All evaluations, services and therapies are free through age three.
Erin: So, let’s say they determine that my child qualifies for services. What kinds of things should I ask for? Do I have any say?
Jill: It depends on what they qualify for. If they do a full evaluation, they may qualify for speech, occupational therapy, physical therapy. They will make recommendations based on the evaluation. In our situation, we were evaluated for only speech. Two weeks into speech therapy, our therapist said, “Would you mind if I had the occupational therapist come and take a look at the boys?” And then they qualified for occupational therapy. As we went along, more and more things came up. And it’s not a situation where if you’re denied services, that’s it. Keep pushing. You can ask for them to be re-evaluated after a certain time period.
Erin: Does AZEIP give diagnoses?
Jill: They are not giving any diagnoses. If you have a diagnosis going in, that’s probably going to help you. You have to pursue that separately. Depending on what the evaluation says and your pediatrician recommends, you will want to consult with a developmental pediatrician, such as Melmed or PCH or SARC. I’ve seen wait lists up to six months or a year for developmental pediatricians. However, I know with Melmed, if you ask to be put on the cancellation wait list, you’ll get in much, much faster. Depending on the situation, whether it’s autism or other delays, there may be other resources to access.
Erin: Do AZEIP therapists come to my home?
Jill: In most cases, they’re going to come to your house. The coordinator refers your case to a local network of therapists based on where you live. Then the therapist from that network will come to your home. In rare cases, home therapy may not be enough. For example, my kids had occupational therapy in the clinic, but still covered by AZEIP.
Erin: What if I’m assigned a therapy provider, and I don’t think they are the right fit for my kids? What can I do?
Jill: You have a therapy provider, but you also have an AZEIP service coordinator, basically like a case manager. So if it’s not working, you contact that case manager, and they help you find a different provider.
Erin: How do you know if it’s not working?
Jill: There’s a whole process that they call “pairing.” So the therapist and the child, the first session or two, might not do a lot of actual work. They might play together just so they can get to know each other. Trust your gut. If you can see that your child is struggling with this person, beyond the actual work—because it will be a struggle to do the work, and they’re not going to want to do a lot of it at first. They are going to be spending a lot of time together. At least an hour a week. If you see there isn’t a connection, and this person is going to be in your house, and kind of become part of your family for a little while, you need that to work. And you need that person to communicate back to you as well. So there needs to be a connection with you, too.
Erin: Thanks, Jill! That’s it for today. We’ll pick up the conversation next week with what happens when your child ages out of AZEIP.
Jill: No problem. I wish I had had somebody to guide me through that first year. If I can help somebody else get through that so they don't have to struggle, that's my little bit of payback for the help I've received. I encourage any PVMOM parent with concerns to join the special needs forum, even if just to ask questions.
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