Nitty Gritty of Diagnosis and Services for Autism in Arizona

When our son was about 18 months old, we started to notice that he had lost a significant amount of his vocabulary. We were first time parents, unsure what was being a toddler and what was more. At around two years old, his teacher started to discuss some of the differences she saw between him and the other children. We started the process of getting him evaluated. The numerous unanswered questions we faced sent me on massive search.

What do you do if your child is not meeting developmental milestones? If you have had a daycare provider/school talk to you about your child’s development, or you just have a gut feeling you might need to get an assessment for your child for autism.

First, I want to say this can be a very confusing, scary, long, hard process. Hang in there.

Some days get easier, and some days its a struggle to keep pushing forward. For us, it was close to two years before we got a formal diagnosis.

Most websites, if you are on google searching, will tell you to speak to your pediatrician about your concerns. Some parents have very receptive pediatricians others have pediatricians who will tell you that you have nothing to worry about, especially if your child is still very young. If you have a lingering feeling, advocate for a closer look.

Your pediatrician is the person that makes the recommendation to a developmental pediatrician or another agency to evaluate your child. It took us months and months to get an appointment with a developmental pediatrician.

There are long, long, long waitlists with most agencies (not all) to get a diagnosis.

For me, this was extremely frustrating and defeating. I wish I had known that we could look outside of the developmental pediatrician for an evaluation. I regularly called to see if we could get an appointment. I asked about getting on a cancellation list but could not get on a cancellation list until we had an appointment. Many weeks I would hang up in pure frustration with the process, most often sitting in my car, cramming the call into my day, and when they told me yet again no appointment, I would feel crushed and so lost.

All the websites talk about how important it is to get early intervention for your child, but it can take so long to get an appointment. Once we did get an appointment, it was one appointment with the developmental pediatrician, one with a psychologist, and a third to tell us the results. Riding a roller coaster of forms, appointments, blood work, and emotions.

There were some things I did while we waited for our developmental pediatrician appointment pre diagnosis. Every state has an early intervention program for children that are under three.

AzEIP-Arizona Early Intervention Program

To qualify for Arizona Early Intervention Program your child needs to have an established condition which has a high probability of resulting in a developmental delay, as defined by the State.

Link below:

https://des.az.gov/services/disabilities/early-intervention/arizona-early-intervention-program-azeip-eligibility

Arizona considers a child to be developmentally delayed when s/he has not reached 50% of the developmental milestones, expected at her/his chronological age, in one or more of the defined areas:

Cognitive development (how well s/he can solve problems and interact with the world), physical development (what s/he can do physically), including vision and hearing, communication development (how s/he uses her/his voice and gestures to communicate), social or emotional development (how s/he expresses and responds to feelings), and adaptive development (how s/he does with sleeping, eating, dressing, and using the toilet).

This is on a scoring system based on questions answered and observations of your child at your child’s assessment.

How to contact AzEIP:

You can submit a referral online or contact the referral contact at your local Early Intervention Program to get services started. Anyone can submit a referral.

Links below:

https://des.az.gov/services/disabilities/developmental-infant/contact-arizona-early-intervention-program

https://azeip.azdes.gov/AzEIP/AzeipRef/Forms/Categories.aspx

AzEip will contact you and schedule an appointment and to do an assessment of your child. They come to your home for the assessment. This 100% free, and if your child qualifies for services, they are also free. Services can include speech therapy, occupational therapy, and others. You will have a team of people working with your child, and they will assign a team lead.

AzEIP can also help you fill out your application for DDD services and set up a meeting with your local school district for the public school evaluation.

We also got a referral to get our son’s hearing tested to rule this issue out from our pediatrician pre diagnosis.

DDD-Division of Developmental Disabilities

The Department of Economic Security (DES) is the gatekeeper to a variety of services in Arizona. The Division of Developmental Disabilities (DDD) is the provider of those services to individuals with developmental delays/disabilities and their families.

How do you apply for DDD services: Fill out the application, get supporting documents and complete the application, you can e-mail it to DDDApply@azdes.gov.

We had a terrible experience trying to drop off the forms at one of the offices before we knew you could e-mail.

Website: Https://www.des.az.gov/services/disabilities/developmental-disabilities

Application link below:

https://des.az.gov/sites/default/files/dl/DDD-1972A.pdf?time=1595209080605

Documents you will need for this application: Copy of birth certificate or citizenship, or guardianship/legal responsibility documents (if applicable), copy of insurance card front and back, diagnosis evaluation/school report showing proof of lifelong condition.

This can be so confusing! How do you submit the documentation if you do not have an evaluation done or diagnosis. You can submit any documentation you have.

For children 0-3, your child must have a significant delay in one or more developmental areas or an established condition that could lead to a developmental disability. Which can be established through a variety of documentation.

For children aged 3 years to 6 years, you must voluntarily apply, be an Arizona resident, and either have one of the listed disabilities, which includes Autism Spectrum Disorder or be at risk for developing one of these disabilities to qualify.

For children 6 to adult, you must voluntarily apply, be an Arizona resident, be diagnosed with a developmental disability listed, which includes Autism Spectrum Disorder, which developed before the age of 18 and is likely to continue indefinitely, and there must also be significant limitations in daily life skills related to the disability.

Who can provide the information: Licensed Physician, School Psychologist, Early Childhood Education Specialist, Nurse Practitioner, Physician’s Assistant, Licensed Psychologist, Pediatrician, Child Neurogist.

We submitted our son’s school evaluation (which I will discuss next), his AzEIP paperwork, his speech evaluation (while we waited for DDD, we got a referral from our pediatrician for speech therapy and submitted it to our private insurance, which you can also do while you wait for your evaluation appointment if you have medical insurance. I had to call our private insurance numerous times to fight if it was medically necessary or not because most insurance won’t cover without a diagnosis. We did this because my son turned three and no longer qualified for AzEIP services). Even though we didn’t have his full diagnosis yet by the time we submitted for DDD, we did have an at-risk diagnosis from his first visit with the developmental pediatrician, which we also submitted.

My recommendation, give as many documents as you can to DDD to show that your child needs services.

What services do you get with DDD: not much at all.

Once you are approved for DDD, you will be assigned a DDD worker who sets up your services and meets with you quarterly. If you are already with a provider, for example, speech therapy, the worker can approve that agency to continue services once you are covered through ALTCS. We still used the same OT and speech provider we were using before his diagnosis. Whoever is assigned to your child through DDD can change often.

ALTCS-Arizona Long Term Care System (ALTCS, pronounced ALL-tecs)

Not only do you need to apply for DDD you also need to apply for ALTCS which stands for Arizona Long Term Care System. ALTCS is what provides you with services such as speech therapy, occupational therapy, respite, habilitation, ABA, etc.

Link below:

https://des.az.gov/sites/default/files/dl/FAA-0001A.pdf

After you submit your ALTCS paperwork, you must have the medical interview and financial interview.

There is a lot of mystery around who gets approved for ALTCS and who doesn’t.

It is all on a point system based on the age of your child and development. The medical interview consists of a person coming to your house to ask you questions about your child on what things they can and cannot do. It was very unclear if our son would get approved or not at the end of our interview. I would seek out other parents who have been through this process to talk about what to expect. This was very helpful for us before the interview. A financial interview is based on what money your child has, not what the household has.

Public school evaluation

If you are enrolled with AzEIP prior to your child turning three they will set up an interview with your local public school to get the process started for a school evaluation. The public school system does their own evaluation separate from the evaluation you get from a professional.

At the time AzEIP was setting this up for us, it was unclear to me (yes, if you are wondering at this point in my post, I was a hot mess throughout this process) that our son could be placed in a developmental preschool in our district if he qualified. AzEIP set up our interview with the school, and then the school scheduled an evaluation with the school psychiatrist.

We moved school districts in the middle of this process, since our son was already in a school, and that it wasn’t clear that the evaluation would be to get him into a developmental preschool program, this process was delayed. I ask a variety of questions at our visit with the school psychologist, but our son’s placement was very vague.

I ended up having to call our new school district and started the process over again. Our experience with the second school district was much better than the first school district. They answered my questions about the process and what would happen if he qualified. Also, how he qualified and what type of classroom he would be assigned to.

We had a screening with the second school, which included eye and ear testing. Then they set a second appointment for the actual evaluation, which took about a month. The evaluation consisted of a meeting with the school psychologist, speech provider for the school, and OT provider. Once he qualified, they had a meeting to sign his IEP plan (Individualized Education Program), and he was placed in a classroom. Our son received OT and speech services in the classroom. They also had to provide transportation to and from school if it was needed.

Our son loved this program and made huge growth during his time there. COVID-19 stopped all of the public schools in classroom education, which was very sad for us all. Developmental preschool did not work for us with online school.

Link to Early Childhood Special Education: https://www.azed.gov/ece/parent-resources/

You can apply for DDD, ALTCS, and do your school evaluation all at the same time. The more you can do at once the sooner you can get approved and covered for services.

To send kids to public school or not to send kids to public school (or any in person classroom)?

This is a huge question for a lot of parents right now due to COVID-19.

ESA-Empowerment Scholarship Account Program

The Empowerment Scholarship Account program is an account administered by the Arizona Department of Education that is funded by state tax dollars to provide educational options for qualified students.

By opting out of public school, parents can seek alternative education services, such as private school or home-based education.

There are nine eligibility types for ESA. There is a lot of information about ESA, what is covered, and what is not covered. Here is the link to the application, and there is an ESA Facebook group dedicated to these questions.

Link: https://www.azed.gov/esa/eligibility-requirements/

Respite and Habilitation:

Respite and habilitation can be provided by a family member or a person employed by an agency. There are agencies around Arizona who will provide training and get everything set up for you. The agency sends you various forms to fill out. You also have to take CPR, some training classes, and get fingerprinted, and need a level one fingerprint clearance card.

Respite is time someone watches your child for you to get respite from attending to their needs. Habilitation is specific goals that you set up with your DDD worker (example, something like potty training) separate from your respite hours.

Respite Hours are allocated at 600 per year, which runs October to January and January to September divided by month. This works out to approximately 50 hours a month. Habilitation hours are set with your DDD worker and are in addition to respite hours.

Currently, due to COVID-19, parents are allowed to get approved to provide habilitation hours to our children. Also, due to COVID-19, respite hours were increased to 720 per year. You would go through the same process as a family member or employee to get approved to provide habilitation.

This is not everything there is out there, just an overview of some of the things we learned piece by piece.

There are many supportive Facebook groups and organizations that can help you navigate more of this process and provide support. I am so grateful for some of the amazing people I have met through this process.

Be kind to yourself, it can seem like such an uphill climb through this, especially when you feel all of the emotions that go along with a diagnosis. I know for me anything related to my children hits me directly in my core. I struggled to walk through this process and even look at some of these forms some days.

I would like to dive deeper into some of these systems with future blog posts. Let me know if there is something else you would like to read about.

Peaceofautsim@gmail.com

Tabitha Cabrera

© 2020, Tabitha Cabrera. All rights reserved.