So you have a diagnosis for your child. Now what?
Maybe your world has turned upside down, or you are finally getting the answers you have been seeking. If you are still pursuing a diagnosis, or you are concerned your child may have a delay or disability, read on.
You are not alone. Support is available.
For children under age 3, early intervention is key. Ohio Early Intervention (EI) works with families with children from birth to age 3 with developmental delays or disabilities. EI professionals work with you to identify your child’s strengths and needs and address concerns as early as possible. Services are provided where you live, play and spend your day.
While EI professionals do not diagnose children, developmental experts will determine if your child is eligible for services and will help your family address your child’s specific developmental, physical, social and emotional needs. If you do not have a medical diagnosis, do not wait.
Research shows that starting EI services early gives a child the best chance to learn and grow, and can reduce the need for services later.
A diagnosis can put you on a roller coaster of emotions and leave you overwhelmed and unsure of where to begin. To help you move forward and stay on track, we asked children’s development and early intervention experts — including two local moms — to outline the EI process and share advice from their personal and professional experience. These eight steps can guide you along this new journey:
1. BREATHE. Process and understand the diagnosis.
Whatever you are feeling is okay. Your child’s diagnosis may be a surprise, or it may reaffirm what you suspected for some time. You could even be facing comorbid or co-occurring conditions. You may feel overwhelmed, sad, relieved, uncertain, or all of the above. This is a moment in time. Feelings change, and you will grow.
Your child is more than a diagnosis. “A lot of families are concerned about the diagnosis name and afraid,” says Nikki Montgomery, senior community liaison for Bright Beginnings, which supports families through early intervention services in Cuyahoga County. “There is fear and stigma around disability. It is important to look at the whole child and recognize the label is for the understanding of others. It is not who your child is. It is really about getting them the support they need.”
“My 10-year-old son, Richie, was born with a complex medical genetic condition affecting muscles (RYR1-related) called congenital fiber-type disproportion myopathy and later diagnosed with autism and ADHD. He has come a long way since the NICU. Richie is awesome, caring and engaging. He wants to be an astrophysicist and takes part in robotics activities.”
Ask the experts. “Learn as much as possible from reliable sources like doctors and teachers, not just bloggers and parent groups online,” says Montgomery. “Richie’s first diagnosis was rare. Living in Toledo at the time, we connected with the only geneticist in town. There aren’t a lot of experts on this condition, but we keep up with the website on the condition, learn what’s new and recognize the science changes over time.”
2. ACT EARLY.
Early Intervention, EI, is part of the federal Individuals with Disabilities Education Act (IDEA), a law that ensures students with a disability are provided with Free Appropriate Public Education (FAPE) tailored to their individual needs. Part C covers early intervention services for children from birth through age 2, while Part B applies to services for school-aged children (3 through 21 years).
“The Ohio Department of Developmental Disabilities (ODODD) oversees EI in Ohio, and they contract with entities across the state to provide services in the counties,” explains Karen Mintzer, director of Bright Beginnings. “Early Intervention is part of the Help Me Grow system of supports. Each county identifies who will coordinate EI and who gets the referrals for children under age 3 with concerns about development, a diagnosed condition, or those in the process of getting a diagnosis. The agency assigns a service coordinator who helps families identify concerns and walks them through the process.”
Mintzer sees parents who are overwhelmed and exhausted. “Be honest with yourself about what you are struggling with, what is working and what is not — from bath-time to feeding or sleeping — so EI services can best meet your needs and goals,” she says.
Rechama Jacobovitch, BCBA (Board Certified Behavior Analyst), is clinical director for Building Blocks Therapy, which provides ABA (applied behavior analysis) therapy services — including speech, occupational therapy (OT) and physical therapy (PT) — for children with autism at offices in Avon, Highland Heights and Solon. She is also a mother of six, including two boys with ADHD, two girls with school modifications and needs, and an 18-month-old preemie currently receiving EI.
“Intensive intervention is a game-changer,” Jacobovitch says. “I see how receiving ABA early can help children and their families live and fulfill their dreams. The success is phenomenal. I am still in touch with kiddos who are now in college or have jobs. They have less [aggressive, self-injurious and/or repetitive] behaviors and are more functional coming from intensive early intervention.”
“We hear of too many parents being told to ‘wait and see,’ so they miss out on precious early intervention time,” she adds. “They typically go to the pediatrician for the one-year visit with some developmental concerns and are told to come back in six months. The referral to a developmental pediatrician at a young age is the missing piece. And don’t wait on a diagnosis to begin early intervention.”
If your child is under 3, get a referral to Ohio Early Intervention and determine eligibility. Call 1-800-755-GROW (4769) or visit OhioEarlyIntervention.org to get started.
3. LINE UP SERVICE PROVIDERS.
“Engage in intensive early intervention that is one-on-one, engaging, evidence-based and addresses the comprehensive needs of the child,” says Dr. Rick Solomon, developmental and behavioral pediatrician at the Ann Arbor Center for Developmental and Behavioral Pediatrics, author and founder of the PLAY Project, an early intervention program that uses play to engage children with autism through a parent-implemented approach.
He defines intensity as 10 to 15 hours per week (roughly two hours a day) and says comprehensive needs include speech and language, occupational therapy, education and both ABA and PLAY therapy.
“Young children with autism have tremendous potential within them to make progress,” he says, and he advises autism parents seek EI of the developmental or behavioral type.” he says. “The behavioral type is known as ABA (applied behavior analysis) and the EI version is called EIBI (early intensive behavioral intervention) as offered through ABA agencies, but in my extensive experience, the most important type of early intensive intervention is developmental in nature focusing on relationships. In Ohio, that is available in most counties as the PLAY Project through EI. Other options are More Than Words by Hanen and the Early Start Denver Model.
“In-home EI and clinical services can be done separately or layered together,” Montgomery adds. “Engage in services based on your capacity and your child’s needs. You do not have to do everything all at once.”
“Keep in mind, school services are about accessing curriculum,” Montgomery continues. “For example, a child with sensory processing needs may benefit from therapeutic listening that is offered by a private OT but not the school’s OT services.”
“Private therapy can be costly in time, access and money. EI helps eliminate those barriers early, then you will need a plan to continue services after your child turns 3,” she advises. Facilitating open communication across service providers is also recommended. Sharing evaluation results, approaches, etc. in a collaborative way helps maintain consistency for better outcomes.
4. DREAM BIG. Plan and make your voice heard.
Do not doubt yourself. You know your child best.
“Planning ahead takes hope,” Montgomery says. “My son was medically fragile. Early intervention taught me to think about not just right now, but what can he grow into, and plan accordingly. We did a visioning process in our program to see where he could be.”
She shares how their initial autism concerns were dismissed. “We researched and consulted with reliable resources and pushed for an autism diagnosis since age 3 then got one at age 7,” she says.
“That early on, we didn’t know we were taking the right steps without the EI process,” she says. “My husband used to be an intervention specialist, so we knew it was important to feel empowered to speak up. It’s important to be the spokesperson for your child if your child needs that and empower them to be their own spokesperson.”
5. TRAIN YOURSELF.
Engage in the parent training recommended or required by your service providers and medical team. Whether your child needs extensive medical care and administration of medications or specific techniques to address communication or behavior challenges, for example, do your homework to become an expert in your own right.
“My son’s diagnosis changed the course of my career,” Montgomery says. “I was a communications director studying language use in the classroom, then I switched to study critical thinking in parents of medically complex kids and earned a second master’s degree and patient advocacy graduate certificate. My husband has a doctorate in education, so we both strategize.”
Jacobovitch notes parent training is an integral part of the Building Blocks ABA program. “We are only with the child part of the time, so parent intervention is key for optimal success achieving a child’s targets and generalizing skills,” she explains.
6. FIND YOUR TRIBE.
A diagnosis can feel isolating, but finding others on similar journeys helps you to know you are not alone. Connect to the many online groups and resources across the region. There are strong online social media communities for parents who have children with disabilities. Get involved in recreational or social activities. Attend relevant conferences and speaker events. However, be careful not to compare your child and family — no two journeys are alike.
7. UNDERSTAND LAWS AND INSURANCE.
This complex subject can be daunting, but it is important to learn about what your insurance covers and the laws that apply to your child. “Your EI service coordinator can help you navigate the process, direct you to resources and access your health insurance or Medicaid to pay for services,” Mintzer says.
In an online guide to help families find funds for therapies, specialized education and equipment, Connecting for Kids suggests calling your insurance provider, checking with the Children with Medical Handicaps supplemental insurance program, exploring scholarships and grants, and contacting nonprofit lending libraries.
The Jon Peterson Special Needs Scholarship Program (JPSN) begins in kindergarten and gives parents of children with disabilities the choice to send their child to special education programs other than the one operated by their school district of residence to receive the education and the services outlined in their Individualized Education Program (IEP), while the Ohio Department of Education’s Autism Scholarship starts at age 3 and is specific to children with autism.
8. TAKE CARE OF YOUR FAMILY… AND YOURSELF!
“Recognize a diagnosis can mean a higher level of stress for the family as a whole, because it is harder to get what you need,” says Montgomery. “Build supports for yourselves, whether that’s a support group or therapist to talk about your journey. Mental health and social support are key components of success.”
As for practicing self-care, she advises, “It shouldn’t be a high-pressure situation… I try to find small things that bring me moments of peace and joy throughout the day, like taking a long shower. It’s a simple way to be thoughtful about it without planning a concrete activity like a girls trip or getting nails done. I don’t have time for that. This works better for balance and is not as stressful to plan.”
The experts also note that siblings may feel confused, left out, jealous or angry, so be sure to dedicate attention and one-on-one time to them. Explain the diagnosis and what it means for the family in terms they understand. Some community groups offer parent respite nights. Identify and take advantage of such opportunities as you are comfortable.
The Early Intervention Process
Each county is different, so check with your local county agencies for information specific to your community. According to Bright Beginnings of Cuyahoga County, here is what you can expect in the EI Process:
• Referral — After a referral from a parent, doctor or health care professional, your child is assigned an early intervention service coordinator (EISC) who will help you navigate the process.
• Eligibility — In Ohio, some children with certain diagnosed conditions are automatically eligible. Others go through a developmental evaluation process using an evaluation tool and information obtained from you, observations of your child and review of your child’s medical records. Eligibility is not income-based and there is no cost to you to determine eligibility.
• Comprehensive Assessment — If your child is eligible for EI, your EISC will get your consent to complete an assessment to understand how your child participates in home life and what your goals are for your child. The team learns about your child’s interests and abilities and your family’s routines and priorities. A voluntary family-directed assessment is another opportunity to better understand your family and any additional support needed, like finding a medical home or securing transportation assistance.
• Individualized Family Service Plan An IFSP is developed with you and your team that describes the service(s) needed to help you meet outcomes and outlines when, where, and how those services will be provided and paid for. Once complete and signed, it will be reviewed at least every six months. There is no cost to you to develop the IFSP.
• EI Services — Services must begin within 30 days of your signing the IFSP, and they continue to age 3 unless your child no longer needs services or you decide to discontinue them. One discipline is identified as the primary service provider, and others are brought in as needed. Members of the team can include your service coordinator, occupational therapist, physical therapist, speech/language pathologist, developmental specialist, early childhood mental health therapist, registered dietician, licensed social workers, vision and hearing specialists and others as needed. Services happen during real-life activities important to your family, including mealtime, diaper changing, time at the playground or shopping.
The first 55 hours of services (or equivalent of assistive technology/adaptive equipment) in a year are provided at no cost to all families. If more than 55 hours are needed, your service coordinator will explain what those costs might be. During COVID-19, services were offered virtually and now also include outdoor visits.
• Transition to preschool or childcare — Transition planning begins at least 90 days before a child turns 3. Many children in EI are eligible at age 3 for special education services provided by the Ohio Department of Education. Other families choose to enroll their child in child care or care for their child in their home. The EI team supports you as you decide next steps and the IFSP is updated accordingly.
If your child with a diagnosis is age 3 to 21, many of these same recommendations apply. However, instead of Ohio Early Intervention, contact:
• Your public school district’s Director of Pupil Services or Special Education Coordinator and the principal at your child’s school to request a formal MFE (multi-factored evaluation) or ETR (Evaluation Team Report) to determine what assistance your child needs to succeed in the learning environment. Alternatively, research specialty schools that offer a specialized educational experience for children with disabilities and/or learning differences.
If your child qualifies for special services, an Individualized Education Program (IEP) or Section 504 plan will be developed for your child to receive special services. Learn about best-practice approaches and sample goals for these plans. A good online resource is wrightslaw.com for special education law and advocacy.
• Your local county board of developmental disabilities to assess your child’s eligibility for services and possible assistance with recreational therapies, supplies and other needs. You can look up your county at oacbdd.org