Autism and Early Intervention: What You Need to Know
Editor: This is excerpted with permission from Autism Spectrum Disorders: An Essential Guidebook for the Newly Diagnosed Child, an excellent resource for parents. The reader-friendly yet detailed text covers what to do after a diagnosis, from day 1 through month 12. Families will feel they have a knowledgeable and supportive friend at their side, guiding them through every step. This post was first published by ACN in 2012 and is being re-posted due to the numbers of requests we receive on this topic.
You can “Look inside the book” to find a comprehensive Table of Contents, giving you a good idea of the book’s helpful topics. See here.
How to Access Early Intervention Services
Early Intervention (EI) is a statewide, federally funded program for infants and toddlers with disabilities, as well as their families. It is vital to get your child enrolled immediately at the first sign of developmental delay, even before a diagnosis is made.
Let’s take a closer look at Early Intervention, its services, and how it is structured.
Introducing IDEA
In 1975 the U.S. Congress passed the Individuals with Disabilities Education Act (IDEA), which established federal standards for the provision of special education services to children with disabilities. Until that time, public schools either excluded these children or segregated them into separate facilities with little or no appropriate instruction or assistance.
IDEA contains many initiatives, but three key programs critical to the expansion and improvement of services to children with disabilities are:
Part B of IDEA: Assistance for Education of All Children with Disabilities, which governs services provided by public school districts to children from ages three to twenty-one.
Part C of IDEA: The Program for Infants and Toddlers with Disabilities, which governs services provided by the Early Intervention Program to children from birth to age three (and in some states through age five).
Part D of IDEA: National Activities, which “authorizes a variety of activities to help states and local communities facilitate systemic change toward improvement and positive results for children, youth and families, from birth through 21. These activities include research, training and professional development, parent training and information centers, demonstration and outreach projects, state improvement projects, dissemination, technical assistance and technology applications. Often called ‘discretionary projects,’ these are supported by competitive federal grants, cooperative agreements or contracts by the U.S. Department of Education.”
In this book, we will focus on Part B and Part C of IDEA. Part B will be discussed in Month 2, “Learning: Part I: Know Your Rights.”
What Is Early Intervention?
IDEA Part C services are provided to infants and toddlers from birth to age three (and in some states through age five) with disabilities, as well as their families. The goal of Early Intervention (EI) is to provide quality, early support services to enhance the capacity of families to meet the developmental needs of children within the specified ages who have delays and disabilities.
Each state submits to the federal government an application on a yearly basis for funding an EI program of coordinated and comprehensive services. Although it is not mandatory, all states participate in this program. The governor of each state or jurisdiction appoints a lead agency within the state to administer the program; in many states it is the Department of Health or the Department of Education. Each state develops its own criteria for eligibility within the federal IDEA parameters.
There is an EI program in every county of every state. The services provided vary from state to state; however, in general they will provide:
- screening
- evaluation and assessment
- service coordination
- family training, counseling, and home visits
- speech, occupational, and physical therapies
- psychological, vision, and audiology services
- social work services
- assistive technology
- nursing services
- nutritional counseling
- transportation
- other services
Initially, these services were provided only in center-based facilities. Now, however, Early Intervention services are provided in the child’s home or community-based environments.
Early Intervention services are “designed to meet the developmental needs of each eligible child and the needs of the family related to enhancing the child’s development. Services are:
- Selected in collaboration with the parents
- Provided in accordance with an Individualized Family Service Plan (IFSP), under public supervision, and by qualified personnel (as defined in Sec. 303.21)
- Provided at no cost, unless, subject to Sec. 303.520(b)(3), Federal or State law provides for a system of payments by families, including a schedule of sliding fees
- Provided in natural environments, including the home and community settings in which children without disabilities participate; and they must meet the standards of the State.”
Who Is Eligible for Early Intervention?
Each state must provide services to children with significant developmental delay or to those who have a diagnosed mental or physical condition (such as autism, Down syndrome, spina bifida, blindness, deafness, etc.) that has a high probability of resulting in a developmental delay.
Eligibility criteria are different in every state but may be based upon the level of delay in one or more of the following developmental areas:
- adaptive skills — self-help, such as dressing or feeding
- cognitive skills — thinking, including the ability to absorb, process, and understand information
- communicative skills — receptive and expressive language, including understanding what is being said, following directions, and making needs known
- physical skills — gross motor, fine motor, vision and hearing, motor planning, and sensory integration (the ability of the central nervous system to receive, process, and learn from sensations, such as touch, movement, sight, sound, smell, and the pull of gravity, in order to develop skills)
- social/emotional skills — interacting with other children, adults, and the environment
At the discretion of each individual state, they may also provide services to children who are considered at risk for developmental and learning delays because of situations in the child’s environment (lack of adequate parenting, dangerous home environment, etc). Currently, only seven states offer services to at-risk children.
See the NECTAC website (The National Early Childhood Technical Assistance Center) for links to each state’s rules, regulations, and policies.
Early Intervention Program Costs
Federal law requires that the following services be provided at public expense to children and families who are eligible:
- child find/referral
- assessment
- IFSP development and review
- procedural safeguards (family rights)
- service coordination
Depending upon the state in which the family resides, the family may have to assume some, all, or none of the costs for other EI services, depending upon the resources available and the parents’ ability to pay. Medicaid, private health insurance, and state-funded health insurance can sometimes be accessed as payment sources. (For more information about insurance, see Month 2, “Learning, Part II: Know Your Insurance” in this book.)
How to Access Early Intervention Services
Anybody can pick up the telephone and make a referral for a child to receive services: a physician, parent, grandparent, teacher, friend, etc. As long as the parent or guardian grants permission for the child to receive services, the process can begin.
The process is quite simple:
- To find out how to contact and make a referral to Early Intervention in your state, visit the National Dissemination Center for Children with Disabilities (NICHCY) website.
- Once a referral is made, the Early Intervention Program collects information as to the reason for the referral and the results of any screening tests or assessments.
- A service coordinator is assigned, and the child’s record is established.
- The service coordinator contacts the family to gather basic information about the child, the family, and the concerns; provide basic information about the program; and determine the family’s interest in scheduling an initial visit.
- The service coordinator schedules a visit with the family and determines the need to conduct screening.
- The service coordinator meets with the family and conducts a screening, if appropriate, then explains the program and determines with the family if they wish to have their child evaluated and assessed.
- If they do, the service coordinator explains their rights, obtains written parent consent for evaluation and assessment, and provides prior notice for the evaluation.
- The service coordinator gathers information about the child, discusses routines and activities for the child and family, identifies parental concerns and priorities, and identifies family resources to assist in addressing these priorities and concerns.
- The service coordinator will request existing developmental and medical information.
- The service coordinator then determines if the child is automatically eligible, based on a diagnosed condition. She will also determine if an evaluation and assessment are needed based on the child’s needs in each of the developmental domains. She will determine the composition of the evaluation and assessment team, schedule a date and time convenient with the family, provide prior written notice, provide an explanation of their rights, and prepare the family for the evaluation and assessment. Neither the evaluation nor the assessment provides a diagnosis; both are used to identify the needs and strengths of the child who is at risk for developmental delays or disorders, as well as the needs and strengths of the family. They may include both formal and informal procedures to evaluate the child’s ability in all areas of development, including cognitive, language, motor, social, emotional, behavioral, and self-help skills. Often the team of professionals, which may include an educator, social worker, nurse, speech-language pathologist, and occupational and/or physical therapist, will perform the evaluation and assessment in your home. An evaluation and assessment will help to determine if your child is eligible for services and, if so, which services can best meet his needs and be provided by your local Early Intervention program. Keep in mind that this evaluation or assessment is an adjunct and not a substitute for (or equivalent to) an evaluation or assessment conducted by a developmental pediatrician or other developmental professional described in previous chapters. The service coordinator’s role is described in the National Early Childhood Technical Assistance Center’s NECTAC Notes on service coordination caseloads. See the section “Service Coordination Under the IDEA Regulations for Part C.”
- The team, including the family, conducts the evaluation and assessment and then determines eligibility.
- If your child is eligible for EI services, an Individualized Family Service Plan (IFSP) meeting is scheduled. The service coordinator will prepare the family for this meeting.
- The IFSP team meets to develop the IFSP, which includes:
- reviewing parents’ concerns and priorities
- establishing measurable outcome goals
- identifying strategies
- identifying necessary services to support achieving the outcome goals and the timeline for beginning services
- how the services will be provided. (Normally they will be delivered in the child’s natural environment—at home or in the community.)
Keep in mind, as parents you are an integral part of the IFSP team, and the team determines the number of hours of services per week based on the defined outcomes.
The service coordinator obtains the parents’ written consent for IFSP services, and a date is scheduled to begin delivery of services.
Getting the Most Out of Your Local Early Intervention Program
The quality of each EI Program and service is highly variable. Every state, county, and local EI Program is different. The training of each service coordinator, program therapist, and clinician varies, and the quality of the service largely depends upon their skill sets, their levels of experience, and their personalities.
Sometimes it is hard to find out what your local EI Program offers until you ask. Much depends upon your particular EI coordinator and how well he or she informs you of what is available.
There are several things you should do to ensure you receive all the services you are due:
Ask lots of questions of your EI service coordinator.
- Ask lots of questions of your EI service coordinator.
- Learn your rights.
- Talk to other families who are also receiving services from your local EI Program. Find out what they know about the program and what is offered; compare notes.
- Be sure to inquire about:
- speech and language therapy
- occupational and physical therapy
- oromotor therapy (for children with feeding problems)
- getting the help of a social worker or family therapist
- support and play groups, and other community activities
- respite
- referrals for developmental specialists (some Early Intervention Programs contract with developmental pediatricians or other developmental specialists)
Don’t wait to be offered these services; unless you ask, they may not be offered to you!
Keep in mind: EI personnel are usually well-intentioned individuals; however, their program often has limited funds. As service access providers, they are often caught between wanting to help as much as they can and having to stretch federal monies as far as possible. It helps to understand the forces at work from their side of the table, but you still need to advocate for what your child needs.
Each state and county permits service coordinators different latitudes of permission to make recommendations or even to mention what services might be available to the child and family. So ask for what you need; do not wait for it to be offered to you.
In some states, coordinators are not allowed to even mention the word “autism” — only “developmental delays.” The sole basis of their discussions with you is a strict interpretation of the language of their state’s criteria.
From other parents in your local EI program, find out:
- who are the program clinicians you really should get in to see and who
- you should avoid
- what their experience has been navigating the local EI program
- what are the available resources
Ask your service coordinator to introduce you to an experienced parent who can show you the ropes.
Contact your statewide parent training and information center. State parent centers provide free services to families of children with disabilities. To find the center in your state, go to the Parent Center Directory of the Technical Assistance ALLIANCE for Parent Centers.
Another important service your EI coordinator will provide is helping you make the transition from EI to your local public school district (by your child’s third birthday or in some states by your child’s sixth birthday). As your child approaches age three, the EI coordinator will assist you in getting your child into a preschool program and/or in obtaining other support services that your child or your family may need.
When Early Intervention Will Not Provide What Is Required
EI is required to abide by the various state and federal laws regarding the provision of services. But there may be times when they do not—because of underfunding and/or understaffing. For all states, the number of days between the time of the initial referral and the initial IFSP meeting must be within forty-fine days.
To find the regulations and policies for your state, visit NECTAC’s website.
If your local EI Program is not adhering to your state’s policies, you may have to file a complaint with the lead state agency and get its help in resolving the matter. How to deal with these types of situations is discussed in the Month 2 section of this book.
Specialty Providers for Children with Autism Spectrum Disorders
In some states, if a child has a diagnosis of Autism Spectrum Disorder (ASD), he may be eligible to receive individualized, autism-specific services provided by ASD specialty providers—state-funded direct service agencies that provide specialized services to children with ASD. These specialty providers have expertise in using different methodologies and structured, individualized treatments to improve social skills and communication and to manage behaviors that interfere with learning. They collaborate with Early Intervention Program to deliver the IFSP services to the child and family. To find out if your state offers this, check with your local Early Intervention Program.
Build good, solid relationships with your Early Intervention coordinator and clinicians — learn as much as you can from them, and let them help you learn the lay of the land.
