At this point, you might be feeling overwhelmed. Most likely, your child has simply demonstrated some developmental delays. Maybe your a little further along in your journey and your child has just been diagnosed with Autism and you’re still not even sure how to tell your family, much less where to begin to get early intervention services. Just breathe. The fact that you are even looking is an amazing thing. That means that your recognition of your child’s delays was early enough to implement early intervention into their therapy and support regimen. It says that you and your doctors were on it, and are already advocating for your child. Early intervention has been proven to make a huge difference in the lives of children with developmental delays and Autism. Getting services can sometimes be tricky, depending on where you live, but there are options. There are always options.
Many children are diagnosed with an Autism Spectrum Disorder (ASD) during their school years because their delays are not seriously enough acknowledged early on. Therefore, they often miss out on all the benefits of early intervention services. Sometimes Autism is diagnosed before early intervention services begin. Other times, it is diagnosed during or after early intervention services, and it is usually recommended that the child receive Applied Behavior Analysis (ABA) therapy, once an Autism diagnosis has been given. Early intervention services and ABA services are not the same thing. Most early intervention services are provided for children under the age of three and address developmental delays.
Early intervention services are often available to young children for free through government-funded programs. ABA is often covered through insurance or privately.
Related: The Autism Speaks 100 Day Kit for Newly Diagnosed Families of Young Children
Related: 100 Day Kit for School Age Children
In case you haven’t had a chance to read my bio, I’m the mother of five children, including a set of triplets with Autism. I am also an ABA Therapist. The triplets were born as micro-preemies at just two pounds each. Consequently, doctors expected they would have developmental delays. That made it a little harder to advocate for them, but that didn’t stop me. By the way, that is your official role now, too. You are your child’s advocate. Embracing this role is the very first step towards getting the services your child needs and deserves. You know your child best.
As you go through this guide, remember that advocacy is not a temporary role. It’s not an easy position to have.
One of the most difficult things you’ll have to do as an Advocate is engage with others in a non-emotional or at least not overly-emotional way.
While there are times that we can simultaneously take the role of parent and Advocate, we often have to choose one, in numerous scenarios. It’s harder than it sounds. There is nothing and no one we love more in this world than our children. It is understandably difficult to filter our passion and frustrations when dealing with agencies and people who can directly impact the support our child does or does not receive. We’ll discuss this throughout this guide.
BECOMING YOUR CHILD’S ADVOCATE
You are not alone. Bookmark this guide. If you ever start to feel alone, come back. We’ve been there. You got this! You love your child and you are going to do everything in your power to make sure s/he receives every opportunity to excel. You are your child’s hero. Their best interests will be considered at every turn, because you will make sure of it! Slow and steady. Remember to breathe. Take breaks. I’m going to help you through the learning curve to becoming an effective Advocate for your child.
Ask Questions: Keep a small notebook with you, at all times. Inevitably, you will forget some of the thousand questions you have. . Out of nowhere, questions will pop into your head. You’ll remember that you had one more important question just as you hang up the phone with someone it took you three weeks to reach. The more questions you ask, the more likely you are to think of more. You can never ask too many questions. The answers are important and determine your next course of action at every step.
Don’t Be Sorry: It can be very uncomfortable talking to someone who obviously wants to end the call. You might even be infuriated by people’s lack of patience. Perhaps you’ll feel intimidated by someone’s expertise while you are asking all the basic questions. Do not be sorry! You have nothing to be sorry about. If you shed tears, raise your voice or ask the same questions over and over again, that’s okay. It is not necessary to apologize for doing your job as your chid’s Advocate. So, if you ever feel like your going up against someone or an agency, remember that you are on your child’s team. You have the right to expect everyone to be on the same team and you’re Team Captain.
Needs vs. Wants: Since we want everything for our children, the line between what our child needs and what we want for our child can become blurred. In most cases, whether dealing with government funded programs or insurance provided services, the underlying question will be whether or not our child needs what we are asking for. For example, my children have been given 1-1 para-professionals (Aides) during school hours. There was a particular aide that worked very well with one of my boys. I wanted my child to have be assigned the specific aide. Despite my efforts, it was not agreed upon in writing. However, my child was assigned said Aide. The school district agreed that my child needed the academic support of an aide, but could not list that person within the IEP. Since an IEP must be honored at any school within the United States, usually for at least 30 days, allowing a new school district time to conduct their own evaluations, IEPs must be written based on services and support, and not based on specific people and places. If my child’s aide’s employment is terminated or the aide leaves the position and the IEP is written based specifically on the support of the individual aide rather than a qualified individual, it would set the school and district up to be in breach of and non-compliant with the IEP. In other words, agencies and service providers are not going to put promises in writing things that they may not be able to deliver. Whatever the service or support being requested is, the result usually comes down to being in agreement that it is necessary in order for your child to access learning with the equivalent advantages of a typically developing peer of their same age. In fact, for school-aged children, the basic law across the United States is that children with disabilities have the right to a Fair and Appropriate Education (FAPE).
Written Records: Organization and good record keeping is a vital part of advocating for your child. Over time, you may talk to many people and agencies, have multiple medical reports, as well as requests, When keeping records of your interactions with others, remember to note who, what, when, where, and why (the 5 Ws). Who did you speak with? What are the details of the interaction? When did it take place? This should include a date and time. Where did the encounter happen? Was it via email, over the phone, or in-person? Finally, why did the interaction occur? This means defining the purpose of the interaction. Was it an introduction? Were you following up on previous conversations? Was it a general inquiry? You can track this in whatever way is easiest for you, but it must be in writing, In any case of disagreement or mediation, precise record keeping can serve as evidence on your child’s behalf. You will also need to maintain files for all medical exams, education services, support and therapy services, reviews, reports, requests, approvals, denials and appeals.
Written Requests: It is important that you requests things in writing, even when you trust the people you are dealing with. Often, the written request starts a legal timeline that establishes how long the responding agency has to answer your requests. Don’t worry. You don’t have to handwrite thousands of letters and head off to the Post Office as part of your morning routine. Digital correspondence such as email is sufficient. Whenever possible, follow up all phone calls with an email that summarizes the call. This way, if there is any disagreement on the context of a phone call, the responding agency can not claim a he said/she said defense. “
Written Responses: A lot of conflict can be avoided by requiring written responses. You will avoid people denying their statements and have sufficient records of everything your are told and advised. If several people within an agency offer contradictory responses, you’ll be able to provide proof of that with your written records of previous interactions and responses. This streamlines the process of getting accurate information.
Related: How To Become An Advocate for Your Child
Related: A Closer Look at Special Education: Is Your IEP Policy-Proof?
ACCESSING EARLY INTERVENTION SERVICES
While the laws and provisions for children with or at-risk for a disability varies between states, the process for obtaining services is mostly the same. It begins with research. Luckily, you’ve landed here! We’ve done the basic research for you, which will put you well on your way to obtaining early intervention services for your child. The first thing you need to decide is if you are looking for fully-funded services or out-of-pocket services. If you are willing to pay completely out-of-pocket, you have a lot of options. A simple look through the yellow pages, requests for recommendations and a few interviews will land you where you want to be. That’s not a financial option for many families, so we’ll focus on mostly fully-funded services.
Authorized by law | Early intervention is available in every state and territory of the United States. The Individuals with Disabilities Education Act (IDEA) requires it–Part C of IDEA, to be precise. That’s why you’ll sometimes hear early intervention referred to as Part C. (source: Overview of Early Intervention)
Essentially, every child from birth through 21 years of age, has the right to free evaluation and services if deemed necessary through the evaluations. So, your very first resource will always be your school district. This might sound off to you for a 6-month old child who is years away from entering school. Still, this is where it begins!
The Individuals with Disabilities Education Act includes the Child Find mandate. Child Find requires all school districts TO identify, locate and evaluate all children with disabilities, regardless of the severity of their disabilities. This obligation to identify all children who may need special education services exists even if the school is not providing special education services to the child. (source: The Child Find Mandate: What Does It Mean to You? by Pamela Wright & Pete Wright, Esq.)
If a school district finds or suspects that a child has a disability, they must provide evaluation. Again, even if the school is not providing special education services to your child! So, how would a school district suspect that your child, who they’ve never heard of, might have a disability? You are going to tell them! Each state defines disability differently, so it’s important to know your state’s definition. Remember, request and receive information in writing. It’s okay if you need to make a few phone calls to determine exactly who or which department to contact. Just be sure to follow up in writing. That will begin the legal timeline from when the school district must respond within a specific period of time. Usually, this is not more than 60 days.
If you are persistent, the process will go faster. Nonetheless, it can take a lot of time and patience. Starting as early as possible is key!
Related: Early Childhood Technical Assistance Center
Related: Child Find: What It Is and How It Works
When your pediatrician recognizes developmental delays, it can be helpful in speeding up the process of obtaining services. Usually, if your pediatrician has a concern, s/he will refer your child to a pediatric developmental specialist, psychologist, or neuropsychologist for further evaluation and diagnosis. Doctors often like to rule out some other things first, such as hearing and vision problems, so an ENT or Audiologist and Ophthalmologist may be included in the list of doctors that will conduct a spectrum of evaluations. If your child was born prematurely, doctors may not be concerned about developmental delays until your child is at least three years old, depending on your child’s history of prematurity. If you are still concerned or more concerned than your child’s doctor, you can always ask for a second opinion. This is your child’s right, and you may request this as their parent and Advocate. Using a medical professional to obtain early intervention services usually means that the medical professional will make the referral for services, once they are determined to be needed. The most proactive and approach with the fastest results is often a result of combined efforts. As an advocate, reaching out to Child Find or any of the other resource directly to start the process as well as collaborating with your child’s medical doctor is the best path. This will give you the greatest variety of options for early intervention services. You should also note that school districts often require their own evaluations even if your child has a qualifying medical diagnosis. So, dual path efforts are important.
There are a variety of places to find social workers to assist you with referrals and support. If you are a foster parent or have some type of existing relationship with “Children’s Services” in your state, you likely have a social worker. Many hospitals have social workers to assist patients with finding resources such as financial assistance programs, care management, support groups and referrals. In fact, many health organizations, such as Kaiser have social workers that are dedicated to specific departments, such as pediatrics. Many churches have access to social workers, too! Many low-cost/no-cost medical clinics also have some variation of social worker.
RELATED: How to Find a Licensed Social Worker
Many young children who are at risk for developmental delays may be eligible for SSI, from birth or any time thereafter, until they are eighteen years old. Although SSI does not directly cover early intervention, receiving SSI may help your child qualify for many other support services.
Following are some of the conditions that may qualify:
• Total blindness •
• Cerebral palsy
• Down syndrome
• Muscular dystrophy
• Severe intellectual disability (child age 4 or older)
• Symptomatic HIV infection
• Birth weight below 2 pounds, 10 ounces — Social Security evaluates low birth weight in infants from birth to attainment of age 1 and failure to thrive in infants and toddlers from birth to attainment of age 3. We use the infant’s birth weight as documented by an original or certified copy of the infant’s birth certificate or by a medical record signed by a physician.
ADDITIONAL SUPPORTS AND SERVICES
In California, where I live, we have Regional Centers. “The Department of Developmental Services is responsible for designing and coordinating a wide array of services for California residents with developmental disabilities. Regional centers help plan, access, coordinate and monitor these services and supports.” (source: https://www.dds.ca.gov/RC/ProgramServices.cfm)
Many states have similar agencies. Also, you may be able to become a personal care assistant for your disabled child and be paid to provide care for their basic living needs. It’s called by different names, depending on the state. In California, we have In Home Support Services (IHHS). Once you apply on behalf of your child, a social worker evaluates your child’s care needs. Support hours are approved depending on what the social worker determines to be your child’s needs. Many states allow family members, including parents to be the paid provider. Here is a list of states that allow family to be the paid care assistant.
Nationwide, disabled individuals, including children can get a version of In Home Support Services.
Everything is a process. Most of the process follows timelines that are established by laws of the governing state. For example, if you request that your child be evaluated through your local school district, it has to happen within a specific time frame. This varies from state to state. Follow the process for whatever support or services you are trying to obtain. The truth is, sometimes the process can be frustrating and somewhat time-consuming. The good thing is, once you start the process, you are on your way to resolution. Many supports and services have a set of “rights” for the parents and/or child, including your right to appeal. Be sure to ask for a copy of your rights, up front. Usually, these will be provided, but you should always make sure.
If, through the process, you are denied services or support, be sure to get the denial in writing. That’s an important part of being an Advocate, as I mentioned earlier. If you are denied via phone before you even start the process (very rarely happens), follow up with an email confirming the denial. Denial are an important part of the process. You cannot appeal to receive something you have not been denied. Most of the time, if there is no proof of denial, there is no appeal remedy.
You can appeal almost any denial. Appeals have a process, too. Trust the process and be diligent. Try not to be discouraged by the thought of denials and appeals. Sometimes, they are just a formality. When my children started receiving Early Intervention services, Regional Centers still paid for their client’s services. However, usually they required a denial from the primary insurance before they would cover services. When my children needed harnesses due to severe safety issues while being transported, the Regional Center case manager helped with the process of getting them covered. Again, an insurance denial was the first step. Sometimes, denials and appeals can be difficult. Most of the time, they are simply a step in the right direction.
Here are some denials I have personally appealed and won:
- Denial of Special Education services
- In this scenario, I requested an Independent Education Evaluation (IEE). This is essentially a 2nd opinion. In my cases, the school district had to pay for these evaluations. It was a process! I’ve had to do this more than once of the years. Each time, I prevailed. In once instance, the appeal went to mediation, in front of a judge.
- Denial of transportation
- Denial of Respite Services
- Denial of requests for medically necessary weighted blankets and vests
- Denial of requests for harnesses for transportation
- Denial of IHSS
- Denial of Social Security
- Denial of ABA Services
- Denial of Speech Therapy
- Denial of Occupational Therapy
- Denial of Physical Therapy
FAPE Is Not A Privilege, It’s A Right: Special Needs Education 101
Parents Rights: Special Education In California
We’ve come a long way from institutionalizing individuals with Autism, developmental delays, and psychological conditions. Thankfully, information is easily accessible and early intervention services are widely available. Obtaining services will likely be straightforward and streamlined, now that you know where to start. However, like I said at the beginning of this guide, getting services can sometimes be tricky, depending on where you live, but there are options.
There are always options. Also, check out this article about Embracing Your Child’s Characteristics.