Developmental Disabilities

What are developmental disabilities?

Developmental disabilities are a group of conditions due to an impairment in physical, learning, language or behavior areas. They begin during a child’s developmental period, may affect day-to-day functioning, and usually last throughout a person’s life. Most begin before birth, but some happen after birth because of an injury, an infection or other factors (CDC (opens in a new tab)).

The term covers many different conditions. Examples include attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder, cerebral palsy, hearing loss, fragile X syndrome and Tourette syndrome (CDC (opens in a new tab)). A national CDC study also counted blindness, learning disability, intellectual disability, seizures, stuttering and other developmental delays (Zablotsky et al., Pediatrics, 2019 (opens in a new tab)). Known causes of intellectual disability include fetal alcohol spectrum disorders (FASDs) and genetic and chromosomal conditions such as Down syndrome and fragile X syndrome (CDC (opens in a new tab)); rarer genetic conditions, such as Angelman syndrome, belong here too. Having a disability does not mean a person is not healthy or cannot be healthy (CDC (opens in a new tab)).

How common are they?

About 1 in 6 children aged 3 through 17 in the United States — about 17 percent — has one or more developmental disabilities, and they occur in all racial, ethnic and socioeconomic groups (CDC (opens in a new tab)). In national survey data, the share of children with any developmental disability rose from 16.2 percent in 2009–2011 to 17.8 percent in 2015–2017; the authors suggest better awareness and access to health care may play a part (Zablotsky et al., 2019 (opens in a new tab)).

Causes and risk factors

Most developmental disabilities are thought to come from a complex mix of factors, and for most the specific cause is unknown (CDC (opens in a new tab)). Factors CDC lists include (CDC (opens in a new tab)):

• genetics;
• a parent’s health and behaviors during pregnancy, such as smoking and drinking alcohol;
• complications during birth;
• infections the mother has during pregnancy, such as cytomegalovirus (CMV), or the baby has very early in life;
• exposure to high levels of environmental toxins, such as lead;
• low birthweight, premature birth and multiple births (twins or more), which are linked to a higher risk of many developmental disabilities;
• untreated newborn jaundice, which can cause a type of brain damage called kernicterus; early detection and treatment can prevent it.

Some causes can be prevented. FASDs, for example, are preventable if a developing baby is not exposed to alcohol, and there is no known safe amount of alcohol during pregnancy or while trying to get pregnant (CDC (opens in a new tab)).

Milestones: when to act early

Developmental milestones are skills such as smiling for the first time, waving “bye-bye” or taking a first step — things most children can do by a certain age, in how they play, learn, speak, act and move. CDC’s free Learn the Signs. Act Early. program has milestone checklists for ages 2, 4, 6 and 9 months; 1 year, 15 and 18 months; 2 years and 30 months; and 3, 4 and 5 years (CDC (opens in a new tab), CDC (opens in a new tab)).

CDC’s free Milestone Tracker app (iPhone and Android, in English and Spanish) covers ages 2 months to 5 years. It has illustrated checklists with photos and videos, adjusts for babies born early, offers activity tips and reminders about recommended screenings, and lets you share a summary with your child’s doctor (CDC (opens in a new tab)).

CDC advises acting early if your child is not meeting one or more milestones, has lost skills they once had, or you have other concerns (CDC (opens in a new tab)):

1. Talk with your child’s doctor, share your concerns, and ask about developmental screening.
2. If you or the doctor are still concerned, ask for a referral to a specialist for a fuller evaluation.
3. Contact your state’s early intervention program to see if your child can get services.

You know your child best. Early intervention tends to work better the earlier it starts, because a child’s brain connections are most adaptable in the first three years (CDC (opens in a new tab)).

Screening and evaluation

Milestone checklists are not a substitute for screening. The American Academy of Pediatrics recommends general developmental screening with standardized, validated tools at 9, 18 and 30 months, and autism screening at 18 and 24 months or whenever a parent or provider has a concern (CDC (opens in a new tab), CDC (opens in a new tab)). If there is a concern, the doctor may refer your child to a specialist such as a developmental pediatrician, child neurologist, or child psychologist or psychiatrist (CDC (opens in a new tab)). You don’t need to wait for a doctor’s referral or a diagnosis: for a child under 3, call your state’s early intervention program to ask for a free evaluation, and for a child 3 or older, call a local public elementary school to ask for a preschool special education evaluation (CDC (opens in a new tab)). For children enrolled in Medicaid, the EPSDT benefit includes developmental, hearing and vision screening (Medicaid.gov (opens in a new tab)).

Overall health

Children with developmental disabilities are more likely to have other conditions, such as asthma, digestive symptoms, eczema, skin allergies and migraines, so regular visits with a health care provider are especially important (CDC (opens in a new tab)). For specific conditions, see our Autism, Cerebral Palsy, ADD & ADHD and Angelman Syndrome guides. A Down Syndrome guide is coming soon.

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Conventional medicine (AMA)

Every child’s needs are different, so services are built around the child and family. Here is how the main pieces fit together, from birth to adulthood.

1. Early intervention (birth to age 3)

• Early intervention means services and supports for babies and toddlers with developmental delays or disabilities, and their families. It can include speech, physical and occupational therapy and other help based on the child’s and family’s needs (CDC (opens in a new tab), CDC (opens in a new tab)).
• Every state and territory has a program. It is publicly funded and free or reduced-cost for any eligible child, and a doctor’s referral is not necessary — eligibility depends on an evaluation of your child’s skills (CDC (opens in a new tab)).
• This is Part C of the federal Individuals with Disabilities Education Act (IDEA). Services are planned with the family in an Individualized Family Service Plan (IFSP) (ECTA Center (opens in a new tab)).

2. Special education (ages 3 to 21)

• For a child 3 or older, call any local public elementary school — even one your child doesn’t attend — and ask for an evaluation for preschool special education; if staff aren’t sure, ask for the special education director (CDC (opens in a new tab)).
• IDEA Part B covers a free appropriate public education in the least restrictive environment for children with disabilities ages 3 to 21 (ECTA Center (opens in a new tab)). Schools develop an Individualized Education Program (IEP) with the special education and related services each child needs. The IEP team includes the parents and, when appropriate, the child, and the IEP must be reviewed at least once a year. Parents who disagree can ask for a due process hearing (ADA.gov (opens in a new tab)).

3. Section 504 plans

Section 504 of the Rehabilitation Act bars discrimination on the basis of disability in programs that receive federal funds (ADA.gov (opens in a new tab)). Under its regulations, public schools must provide a free appropriate public education to each qualified student with a disability, regardless of the nature or severity of the disability. That can mean regular or special education plus related aids and services, provided without cost to the family (34 CFR §104.33 (opens in a new tab)). Under Section 504, public schools must also make reasonable changes to discipline policies for students with disabilities (Center for Parent Information and Resources (opens in a new tab)). Students who don’t qualify for an IEP may still be helped through Section 504; ask your school.

4. Therapies and medical care

• Speech, occupational and physical therapy can all be part of early intervention, chosen to fit the child’s and family’s needs (CDC (opens in a new tab)).
• Co-occurring health conditions are common, so keep up regular checkups (CDC (opens in a new tab)). Our condition guides cover specific treatments — for example, behavioral approaches and medicines in Autism and ADD & ADHD, and spasticity care in Cerebral Palsy. We name treatments but never doses.

5. Growing up: transition to adult life

• At school: starting no later than the IEP in effect when the student turns 16 (or younger if the team decides), the IEP must include measurable goals for after high school — training, education, employment and, where appropriate, independent living — and the transition services needed to reach them. At least a year before the age of majority, the student must be told which rights will transfer to them (34 CFR §300.320 (opens in a new tab)).
• Health care: Got Transition, a national program on moving from pediatric to adult health care, suggests starting to plan at ages 12 to 14 (Got Transition (opens in a new tab)).
• Work: state vocational rehabilitation (VR) programs help people with disabilities prepare for and get jobs, including competitive integrated employment and supported employment, and may offer pre-employment transition services to students with disabilities (U.S. Department of Education, RSA (opens in a new tab)).

6. Rights across the lifespan

The Americans with Disabilities Act (ADA) is a federal civil rights law that bars discrimination against people with disabilities in everyday activities — in jobs (employers with 15 or more employees), state and local government programs, public transit, and businesses open to the public (ADA.gov (opens in a new tab)). Together with IDEA and Section 504 (ADA.gov (opens in a new tab)), it protects your child’s right to learn, work and take part in community life.

What it costs

• Early intervention: free or reduced-cost for eligible children (CDC (opens in a new tab)).
• School services: free under IDEA (ECTA Center (opens in a new tab)) and Section 504 (34 CFR §104.33 (opens in a new tab)).
• Medicaid: children under 21 enrolled in Medicaid are covered by EPSDT, which includes screening, diagnostic follow-up and medically necessary treatment (Medicaid.gov (opens in a new tab)). See the Wellness Coach section for regional centers, waivers, SSI and ABLE accounts.
• Private evaluations and therapy: cost estimate being researched.

What to expect

Developmental disabilities usually last throughout life (CDC (opens in a new tab)), but early intervention helps children improve their abilities and learn new skills, and can change a child’s developmental path (CDC (opens in a new tab)). Needs change as children grow, so plans should be reviewed along the way.

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MBHA Wellness Coach

Raising a child with a developmental disability brings joy and hard work. An MBHA Wellness Coach can help the whole family with the everyday side of care — alongside, never instead of, your child’s doctors, therapists and school team.

Getting services started

• Track milestones together with the free Milestone Tracker app and bring the summary to checkups (CDC (opens in a new tab)). While you wait for an appointment, keep reading, singing and playing together (CDC (opens in a new tab)).
• Parent Centers — nearly 100 across the U.S. — help families of children and youth with disabilities, from birth to 26, take part in their child’s education and development (Center for Parent Information and Resources (opens in a new tab)). They can help you prepare for IFSP and IEP meetings.

Routines and everyday health

• Routines and rules help children feel safe and know what to expect — for example, a bedtime routine of brushing teeth, reading a book aloud and tucking in. Be consistent and predictable, tailor tasks to your child’s skills, and introduce changes when your child is calm (CDC (opens in a new tab)).
• Regular physical activity is crucial for health and independence for people with disabilities; CDC also advises eating healthy foods in healthy portions and talking openly with your health care professional about concerns (CDC (opens in a new tab)).

Safety: wandering and water

• Wandering (elopement) is a major concern for many families of children with autism and other developmental disabilities, and it raises the risk of drowning and serious injury. Prevention matters most: out-of-reach locks and door alarms, a fence around any home pool, an ID bracelet or card, and a written safety plan with a recent photo. If your child goes missing, call 911 right away and search nearby water and busy streets first (Children’s National Hospital (opens in a new tab)).
• CDC recommends a four-sided pool fence at least 4 feet high with self-closing, self-latching gates, swim lessons, and close, constant adult supervision; take extra care around water if a family member has autism, and give one-on-one supervision to anyone with a seizure disorder (CDC (opens in a new tab)). Many pools offer adaptive swim lessons (Children’s National (opens in a new tab)).

Caring for the caregivers

• Respite care — a break while someone else provides care — is one of the standard services under Medicaid home and community-based services waivers, along with case management, personal care and habilitation (Medicaid.gov (opens in a new tab)).
• In California, regional center services can include respite, counseling for the family, training for parents, recreation and community integration (Cal. Welf. & Inst. Code §4512 (opens in a new tab)).

Help paying for care

• California regional centers: state law defines a developmental disability as one that begins before age 18, is expected to continue indefinitely and is a substantial disability; it includes intellectual disability, cerebral palsy, epilepsy and autism, and conditions closely related to intellectual disability. Substantial disability means significant limits in three or more areas, such as self-care, language, learning, mobility, self-direction, independent living or economic self-sufficiency. Children under 5 can be provisionally eligible with limits in two areas. Services are set in an individual program plan (Cal. Welf. & Inst. Code §4512 (opens in a new tab)). Contact the regional center for your county to ask for an intake.
• Medicaid waivers: states can run home and community-based services waivers for people who would otherwise need an institutional level of care, and can target groups such as people with intellectual disabilities. Each state sets the maximum number of people served (Medicaid.gov (opens in a new tab)), so ask early.
• SSI for children: Supplemental Security Income can help a child whose impairment causes marked and severe functional limitations expected to last at least 12 months. For a child living at home, part of the parents’ income and resources is counted, and at 18 the adult rules apply. In most states, a child who gets SSI can get Medicaid (Social Security Administration (opens in a new tab)).

Planning for the future: ABLE accounts

ABLE accounts are tax-advantaged savings accounts for people with disabilities; money used for qualified disability expenses comes out tax-free (IRS (opens in a new tab)). A person can open one if their disability began before age 46 and they get SSI or Social Security disability benefits, or a doctor certifies marked and severe functional limitations. Up to $100,000 in an ABLE account doesn’t count as a resource for SSI, and savings up to the state plan’s limit don’t affect eligibility for programs such as Medicaid and SNAP. The money can pay for many everyday needs, such as education, housing, transportation, health care and assistive technology (ABLE National Resource Center (opens in a new tab)). A coach can help your family start learning about ABLE options and connect you with benefits counseling.