FAQs

If you suspect your child may have a disability, the first step is typically to talk to your pediatrician, noting specific concerns about delays or unusual behaviors. Other times, a teacher or daycare provider may bring a concern to your attention first. The pediatrician will then make a referral to a specialist, such as a developmental psychologist or pediatrician, who will use interview, observation and diagnostic tests to make a professional diagnosis.

Check out this resource on childhood milestones up to 5 years (can be translated into different languages). Keep in mind that all children develop differently and that just because a child is a bit slower to meet milestones does not necessarily mean they will be diagnosed with a disability. Always talk to your pediatrician about specific concerns!

https://www.cdc.gov/act-early/resources/milestones-checklist-by-age.html

Autism Spectrum Disorders (ASD)- Children diagnosed with ASD meet the following criteria (according to the DSM-5) persistent deficits in the following 3 areas: 1) persistent deficits in social communication and social interaction 2) restricted, repetitive patterns of behavior and 3) symptoms must be present in early development.

Autism in a spectrum disorder, meaning the presentation of people with autism varies greatly from person to person. Diagnostically, ASD is broken into “levels” which describe the level of support the person requires to live independently. In young childhood, it may be hard to “level” since all children need care. Level 1 autism means requiring less supports while level support means requiring significant supports.

Some common characteristics of children with ASD: 

• Impairments with speech and communication- may use alternative methods of communication (e.g., pictures, sign language, gesturing, vocal approximations)
• Difficulty with social interactions- may have a hard time making and maintaining friends due to narrow interests, difficulty with non-verbal and verbal communication and difficulty with understanding social “norms” such as turn taking in conversation or other social pragmatics (e.g., may come off as “blunt” or “unfiltered”)
• Rigidity with environment- (e.g., wearing the same things, eating the same things, sitting in a certain chair, etc.)
• Rigidity with routine- may require sameness with routine, if routine varies from norm may cause distress
• Rigidity with interests- may have a narrow interests- such as being infatuated with one topic (e.g,, cars, dinosaurs, animals) or one activity (e.g,, swinging, spinning).
• Sensory sensitivity- may be more sensitive to sensory stimulation such as noises, chaotic environments, tactile input (e.g., the feeling of sand under bare feet, the feeling of itchy clothing) etc., Can also occur as sensory-seeking- wanting to throw/ smash things, slam or jump onto surfaces, be covered in a heavy blanket, etc.
• Repetitive movements/vocalizations- may engage in repetitive physical movements such as hand flapping or body rocking or vocal noises such as non-contextual sounds or throat clearing, etc.

Attention Deficit Hyperactive Disorder (ADHD)- ADHD is diagnosed by a rating scale which measure inattention, hyperactivity and impulsiveness. As with autism, symptoms need to be present in early childhood and symptoms must impair functioning in at least two settings.

Some examples of ADHD symptoms include:

• Inattention- Difficulty paying attention to details/making careless mistakes; Having trouble focusing on and following through with tasks; Having trouble getting and staying organized; Being easily distracted and forgetful; Often avoids/dislikes tasks that require mental effort over a long period of time
• Hyperactivity/Impulsivess- Often fidgets or squirms in seat; Will leave seat or run around in environments where this is not expected- appears to be “on the go” as if driven by a motor; Often unable to play or take part in quiet leisure activities; Can talk excessively – including “blurting” out answers when not expected or interrupt others; Can have trouble with waiting their turn

Down Syndrome - Down Syndrome is a genetic chromosome disorder caused when abnormal cell division results in the presence of an extra copy of chromosome 21. According to the CDC, 1/775 babies in the US is born with Down syndrome, meaning it is the most common chromosomal condition (Graf and Buckley, 2024).

Each person with Down syndrome is an individual and intellectual and developmental challenges may be mild, moderate or severe. Some people will be healthy while others have significant health problems such as serious heart defects. Children with Down syndrome have distinct facial features, although they will vary from child to child.

Most children with Down syndrome have mild to moderate cognitive impairment. Language is often delayed.

Cerebral Palsy- Cereal palsy is a chronic condition that affects a child’s ability to control their muscles. It’s the most common motor disability in children and is caused by abnormal brain development or damage before birth or early in life. The severity of CP ranges from person to person. Some children with CP may be able to walk and run, and others may need a walker, leg braces or a wheelchair.

Common symptoms include:

• Delays in reaching developmental milestones like sitting/walking
• Abnormal muscle tone- like being floppy or stiff
• Abnormal posture
• Muscle spasms/ jerky movements

Comorbid diagnoses- some children will be diagnosed with more than one medical condition at the same time. The term can also refer to a combination of mental health disorders and physical conditions.

Early intervention provides support and services to very young children, birth-age 3 with developmental delays or disabilities to help them develop essential skills. Children can qualify in a variety of ways including developmental delays in cognition, physical abilities, communication, social skills or another medical condition. Each state has its own early intervention department that will conduct an assessment to determine if your child is eligible for early intervention. Your pediatrician will be able to help refer you to the appropriate system.

Services can also be covered by private insurance in many cases, however coverage can range significantly.

Maine’s early intervention program is run by Child Development Services (CDS). You can self-refer or have your pediatrician refer your child for a free evaluation to determine eligibility for services. You can contact the Help Me Grow program for assistance if needed at 833.714.7969 or https://www.maine.gov/dhhs/ocfs/support-for-families/child-development . A free evaluation will occur by qualified professionals and determine eligibility for services.

For York County the regional CDS Office is at: 39 Limerick Road Arundel, ME 04046

Phone- 207.985.7861

For Cumberland County the regional CDS office is at: CDS Reach 1011 Forest Avenue Portland, ME 04103

Phone- 207.781.8881

For a full list of counties in Maine- https://www.maine.gov/doe/cds/contact

New Hampshire’s early intervention programming is called Family Centered Early Supports and Services (FCESS) and is overseen by the State of New Hampshire Department of Health &  Human Services. Often referred to as “Birth to 3”,  you can find your regional agency here: https://www.dhhs.nh.gov/programs-services/disability-care/developmental-services/birth-3-family-centered-early-supports#agencies

Anyone can make a referral for early intervention if there are concerns about a child’s development, including parents, pediatricians or early childhood teachers/caretakers. A free intake and evaluation will occur by area agencies to determine eligibility for services, which often take place in the home and includes family involvement.

To make a referral- 603.271.3770

Email- [email protected]

After age 3, responsibility for services is transferred to your town’s public education system. Typically, the early intervention providers will coordinate with the public-school providers in order to continue services in a coherent way. If eligible, an IEP will be developed at this point and providers can deliver services at the school, or sometimes providers will come to your home or to a child’s daycare center.

Note that services can also be covered by private insurance in many cases, however coverage can range significantly.

The Individuals with Disabilities Education Act is a US Federal law that guarantees the rights of children with disabilities (ages birth-age 21) to access a Free and Appropriate Education (FAPE) and related services. IDEA mandates that public schools provide the necessary special education services to families at no cost and requires that students with disabilities learn alongside their non-disabled peers as much as possible by promoting access to the “Least Restrictive Environment”. IDEA provides guidelines for the IEP process and early intervention and protects the rights of children with disabilities in the United States while promoting inclusive and effective learning environments.

Free and Appropriate Education refers to the legal right under IDEA (The Individuals with Disabilities Education Act) and section 504  which guarantees that all eligible children with disabilities receive specially designed educational instruction at no cost to families  so they can learn alongside their peers as much as possible.

A 504 plan is a support document created under Section 504 of the Rehabilitation Act (a Civil Rights law) that provides accommodations and services for students with disabilities to remove barriers and ensure they can access and participate in their education. It differs from an IEP because it focuses on accommodations in the regular education classroom rather than specialized instruction.

Some examples of accommodations may include: Extra time on tests, taking tests in a quieter area, use of assistive technology like speech-to-text, access to modified seating.

An IEP (Individual Education Plan) is a legally binding document that details the specialized educational services, goals and accommodations for a student with a disability to ensure they receive a free and appropriate public education (FAPE) in the least restrictive learning environment. The key components are: Present levels of performance, Measurable annual goals, Specific supports and services, Accommodations and modifications, Progress monitoring and reporting and Transition services (for older students).

Once a referral is made, the public school will conduct a comprehensive evaluation to determine eligibility for special education services under the Individuals with Disabilities Act (IDEA). The special education team, which includes parents,  will collaborate to review the evaluation results and develop a student’s IEP. The IEP team will meet at least annually, or more often as needed, to review the student’s progress and make any necessary changes.

Under IDEA (Individuals with Disabilities Education Act) there are 13 categories qualifying children for IEPs. However, a diagnosis alone does not qualify a child for an IEP. The condition must adversely affect the child’s ability to access the school curriculum without additional supports and accommodations.

The categories are as follows: Specific Learning Disability (such as dyslexia, dyscalculia and dysgraphia), Autism Spectrum Disorder, Other Health Impairments (such as ADHD, epilepsy, cancer, diabetes, other conditions that affect health, focus and energy), Speech/Language Impairments, Emotional Disturbance (such as anxiety disorders, depression, bipolar, and severe behavioral issues), Intellectual Disability (like significant cognitive challenges), Hearing/Visual impairments, Traumatic Brain Injury, Orthopedic Impairment (such as cerebral palsy) and Developmental Delay (often used for younger children with delays in more than one area).

An FBA (Functional Behavior Assessment) is a process used to understand the purpose, or function, behind a student’s challenging behaviors by collecting data through interview, direct observation and record reviews. AN FBA can then be used to develop positive behavior supports such as a positive behavior support plan. Typically an FBA is conducted by a BCBA (Board Certified Behavior Analyst) or School Psychologist. FBAs require consent from the family, and the family should be involved in the process through interview in order to the person conducting the FBA to get a full picture of the student’s profile.

A neuropsychological evaluation is a comprehensive assessment by a specialist (typically a psychologist) to understand the brain-behavior relationship, identifying cognitive strengths and weaknesses through standardized tests and interviews to diagnose conditions and offer recommendations for supports to help children thrive at home and school. Neuropsychological evals typically assess intellectual abilities, attention/executive functioning, learning and memory, language, academics, motor skills and social/emotional functioning.

Often referred to as CBT, Cognitive Behavioral Therapy involves helping an individual recognize and work to change negative thinking patterns by focusing on the link between thoughts and feelings and actions and develop healthier coping skills. Through 1:1 talk therapy, CBT is often used for depression, anxiety and other mental health conditions and personality disorders.

Speech and language pathology helps individuals with communication and swallowing difficulties by providing assessment and treatment to improve speech clarity, language comprehension and safe swallowing. A speech-language pathologist works with families to set personalized goals such as improving functional communication and may involve incorporating strategies such as writing, gestures, pictures and technology to facilitate communication.

Childhood apraxia of speech (CAS) is a neurological disorder where the brain struggles to coordinate the physical movements involved with speech such as the rapid movements of the jaw, tongue and lips. While children with apraxia often know what they want to say, the production can be slow and inconsistent with long pauses, difficulty putting sounds together and trouble with rhythm and tone.

Occupational therapy (OT) is a broad healthcare field that often involves individuals working to improve their ability to perform daily tasks in the areas of physical/motor skills (e.g., fine/gross motor, writing), cognitive skills (executive functioning), sensory skills (helping manage sensory processing) and social/emotional skills (regulating emotions). Occupational therapists assist individuals (often with disabilities, injuries or chronic conditions) to help them live more independently.

Physical therapy (PT) is a healthcare field that involves exercise, stretches and other techniques to develop and improve movement and physical abilities. It can often address developmental delays, chronic conditions and/or injuries to enhance motor skills, balance, endurance and strength. Physical therapists work with children (and adults) to promote long-term health and independence.

Pediatric Feeding therapy is a specialized treatment by specialists (often Occupational therapists and/or Speech and language pathologists) that helps children with feeding challenges by addressing physical (oral-motor/swallowing), sensory (texture/taste aversions) or behavioral issues around mealtimes.

Applied Behavior Analysis (ABA) is a scientifically-based approach to understanding and changing behavior and treatment plans are individualized and tailored to the specific needs and goals of each individual. ABA emphasized the use of positive reinforcement to encourage desired behaviors and is commonly used to address a wide range of behavioral challenges (commonly autism, developmental delays, ADHD, and more). Behavior analysis helps us understand (through data collection and analysis) how behavior works and how behavior is affected by the environment. ABA therapy applies our understanding of how behavior works to real situations in order to improve socially significant behaviors.

A Board Certified Behavior Analyst (BCBA) is a certified, masters-level professional who uses the principles of Applied Behavior Analysis, including data collection, to understand, evaluate and change behavior. BCBAs often (but not always) work in the field of developmental disabilities by helping individuals make socially significant improvements in their lives in areas of learning, communication, independence and behavior.

In addition to a master’s degree in a related field (typically behavior analysis), BCBAs must undergo supervised fieldwork and pass a comprehensive exam.

A Registered Behavior Technician (RBT) is a certified professional who implements behavior-analytic services and is primarily supervised by a BCBA, to help individuals with developmental disabilities learn new skills and reduce challenging behaviors. RBT’s jobs involve data collection, skill teaching and direct implementation of programming that is typically designed by BCBAs. To get certified, RBTs must complete a 40-hour training, pass a background check and an exam, and be at least 18 years of age with a high school diploma.

MaineCare is Maine’s Medicaid program which provides free or low-cost health insurance and benefits to low-income residents as well as people with disabilities. Mainecare can help to cover doctor visits, hospital services, prescription medications, emergency care and long-term care services. Apply for MaineCare here: https://www.coverme.gov/shop/apply-for-mainecare or call 1-866.636.0355.

The Katie Beckett Program is a MaineCare benefit that provides health insurance for children under 19 with health conditions and disabilities with families who have household incomes too high for regular MaineCare.

NH Medicaid is a federal and state funded health care program that serves a wide range of individuals including individuals with disabilities. There are different NH Medicaid Providers including WellSense, NH Healthy Families and AmericaHealth Caritas. For more detailed information click here https://www.dhhs.nh.gov/programs-services/medicaid .

To apply for NH Medicaid visit this website: https://nheasy.nh.gov/#/ or you can download a paper application here: https://www.dhhs.nh.gov/apply-assistance

Phone for questions- 1.844.275.3447

Respite care refers to temporary relief provided to caregivers of individualizes with disabilities, chronic illness or special needs. Respite care can be provided in the person’s home or in a caregiving facility and can be funded in different ways.

Section 28 is a MaineCare program offering rehabilitative and community supports for children and youth (up to age 21) with developmental disabilities or behavioral health needs.

Services include skill building in independence, behavior management, social skill development and community inclusion and are provided by behavior health professionals (see below). To qualify for Section 28 the individual must be under 21 and a MaineCare recipient with a developmental, intellectual or behavioral disability that functionally limits their day to day activity. The services must be deemed medically necessary by MaineCare.

Section 65 is a MaineCare program for children and youth with serious emotional and behavioral healthcare needs. The program aims to avoid hospitalization/inpatient treatment through intensive, team-based, family-focused therapy, medication management and community treatment.

A BHP or Behavioral Health Professional is a trained direct care provider who supports children and youth with behavioral or developmental needs in homes, schools and the community. BHPs typically help children develop life skills such as communication, socialization and self-care. Training involves online and in-person sessions, CPR and background checks. BHPs must be 18-years-old with a high school diploma/GED and a driver’s license/reliable transportation. BHPs typically operate under MaineCare funded services.