Developmental Disability Facts and Statistics

Developmental disability is a diverse group of chronic conditions that are due to mental or physical impairments before the age of 22. A developmental disability can occur before, during or after birth. Common well-known developmental disabilities include autism, Down syndrome, cerebral palsy and Fragile X syndrome. Here are some facts and statistics on developmental disabilities.

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  • Developmental Disability is a severe, long-term disability that affect cognitive ability, physical functioning or both.
  • 1 in 6 or about 15% of children aged 3 through 17 have one or more developmental disabilities.
  • Between 2014 and 2016 the prevalence of developmental disability among kids ages 3 to 17 increased from 5.76 percent to 6.99 percent.
  • Prevalence of autism increased 289.5%
  • Prevalence of ADHD increased 33.0 %
  • Males have a higher prevalence of ADHD, autism, learning disabilities, stuttering and other developmental disabilities.
  • Children from families with incomes below the federal poverty level had a higher prevalence of developmental disabilities.
  • 10% of Americans have a family member with an intellectual disability.
  • Intellectual disabilities are 25 times more common than blindness.
  • Every year 125,000 children are born with an intellectual disability
  • Approximately 85% of the intellectual disability is in the mild category.
  • About 10% of the intellectual disability is considered moderate
  • About 3-4% of the intellectual disability population is severe.
  • Only 1-2% is classified as profound.

 

Resources

National Institute of Health

10 Steps to the IEP Process

The Individualized Education Program (IEP) is a federal law, part of the Individual with Disabilities Act. The IEP must be written at least annually for all children with disabilities. Below are the following steps to an IEP.

Step 1. Child is identified as possibly needing special education and related services.

“Child Find.” The state must identify, locate, and evaluate all children with disabilities in the state who need special education and related services. To do so, states conduct “Child Find” activities. A child may be identified by “Child Find,” and parents may be asked if the “Child Find” system can evaluate their child. Parents can also call the “Child Find” system and ask that their child be evaluated. Or —

Referral or request for evaluation. A school professional may ask that a child be evaluated to see if he or she has a disability. Parents may also contact the child’s teacher or other school professional to ask that their child be evaluated. This request may be verbal or in writing. Parental consent is needed before the child may be evaluated. Evaluation needs to be completed within a reasonable time after the parent gives consent.

 

2 Step 2. Child is evaluated.

The evaluation must assess the child in all areas related to the child’s suspected disability. The evaluation results will be used to decide the child’s eligibility for special education and related services and to make decisions about an appropriate educational program for the child. If the parents disagree with the evaluation, they have the right to take their child for an Independent Educational Evaluation (IEE). They can ask that the school system pay for this IEE.

 

3 Step 3. Eligibility is decided.

A group of qualified professionals and the parents look at the child’s evaluation results. Together, they decide if the child is a “child with a disability,” as defined by IDEA. Parents may ask for a hearing to challenge the eligibility decision.

 

4 Step 4. Child is found eligible for services.

If the child is found to be a “child with a disability,” as defined by IDEA, he or she is eligible for special education and related services. Within 30 calendar days after a child is determined eligible, the IEP team must meet to write an IEP for the child.

 

5Step 5. IEP meeting is scheduled.

The school system schedules and conducts the IEP meeting. School staff must:

  • contact the participants, including the parents;
  • notify parents early enough to make sure they have an opportunity to attend;
  • schedule the meeting at a time and place agreeable to parents and the school;
  • tell the parents the purpose, time, and location of the meeting;
  • tell the parents who will be attending; and
  • tell the parents that they may invite people to the meeting who have knowledge or special expertise about the child.

 

6 Step 6. IEP meeting is held and the IEP is written.

The IEP team gathers to talk about the child’s needs and write the student’s IEP. Parents and the student (when appropriate) are part of the team. If the child’s placement is decided by a different group, the parents must be part of that group as well.

Before the school system may provide special education and related services to the child for the first time, the parents must give consent. The child begins to receive services as soon as possible after the meeting.

If the parents do not agree with the IEP and placement, they may discuss their concerns with other members of the IEP team and try to work out an agreement. If they still disagree, parents can ask for mediation, or the school may offer mediation. Parents may file a complaint with the state education agency and may request a due process hearing, at which time mediation must be available.

 

7 Step 7. Services are provided.

The school makes sure that the child’s IEP is being carried out as it was written. Parents are given a copy of the IEP. Each of the child’s teachers and service providers has access to the IEP and knows his or her specific responsibilities for carrying out the IEP. This includes the accommodations, modifications, and supports that must be provided to the child, in keeping with the IEP.

 

8 Step 8. Progress is measured and reported to parents.

The child’s progress toward the annual goals is measured, as stated in the IEP. His or her parents are regularly informed of their child’s progress and whether that progress is enough for the child to achieve the goals by the end of the year. These progress reports must be given to parents at least as often as parents are informed of their nondisabled children’s progress.

 

9 Step 9. IEP is reviewed.

The child’s IEP is reviewed by the IEP team at least once a year, or more often if the parents or school ask for a review. If necessary, the IEP is revised. Parents, as team members, must be invited to attend these meetings. Parents can make suggestions for changes, can agree or disagree with the IEP goals, and agree or disagree with the placement.

If parents do not agree with the IEP and placement, they may discuss their concerns with other members of the IEP team and try to work out an agreement. There are several options, including additional testing, an independent evaluation, or asking for mediation (if available) or a due process hearing. They may also file a complaint with the state education agency.

 

10 Step 10. Child is reevaluated.

At least every three years the child must be reevaluated. This evaluation is often called a “triennial.” Its purpose is to find out if the child continues to be a “child with a disability,” as defined by IDEA, and what the child’s educational needs are. However, the child must be reevaluated more often if conditions warrant or if the child’s parent or teacher asks for a new evaluation.

IEP Articles and Links

8 steps to a successful IEP meeting- Great Schools

10 things to cover at your child’s IEP meeting- Autism Support Network

17 things autism moms want you to know about IEP’s and your child- Living Well Mom

All about the IEP- Center for Parent Information and Resources

How can an IEP help someone with autism?- Applied Behavior Analysis

How are IEP’s designed for students with ASD?– Applied Behavior Analysis

IEP FAQ- Wrightslaw

IEP Guidelines- Down Syndrome Association of Ontario

Individualized Education Program for Autism- WebMD

Individualized plan for a student with cerebral palsy- Knoji

Learning about IEP’s– Understood

Learning Disabilities and IEP’s-Focus on Family

The short and sweet IEP overview- The Parent Center Hub

Understanding IEP’s– Understood

What is an IEP? – Great Schools

 

15 Teaching Strategy Resources for Students With Hearing Impairments

 

Accommodations for students with hearing loss

Five tips for teachers of students with hearing impairments

How to teach hearing impaired students: Strategies for success

Inclusive teaching: deaf and hearing impaired

Instructional strategies for students who are deaf or hard of hearing

Modern teaching techniques for deaf and hard of hearing students

Strategies for hearing impaired students

Suggested teaching strategies

Teaching a child with hearing loss

Teaching hearing impaired children

Teaching strategies for deaf and hearing impaired

Teaching strategies for hearing impaired students

Tips for teachers

Tips for teaching a preschooler with hearing loss

Visual teaching strategies for students who are deaf or hard of hearing

25 Resources on 504 Accommodations and Modifications

Section 504 is a federal law designed to protect the rights of individuals with disabilities in programs and activities that receive Federal financial assistance from the U.S. Department of Education (Edefines a physical or mental impairment as any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genito-urinary; hemic and lymphatic; skin; and endocrine; or any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities.  

5 important classroom accommodations for children with autism

12 accommodations and modifications for dyslexic children in public school

20 modifications for students with autism

21 school accommodations available for children with special needs

504 accommodation checklist

504 plan: ADHD accommodations to manage ADHD symptoms at school

504 plan templates

A 504 plan for those with dyslexia

A parents guide to section 504

504 Education Plans

504 Plan: What is it?

Accommodations and supports for school-age students with autism

Accommodations for ADHD students K-12 in the classroom

Accommodations for students with learning disabilities

Classroom accommodations for ADHD

Classroom accommodations for dyslexic students

Classroom accommodations for students with epilepsy

Developing 504 Classroom accommodation plans

Dyslexia accommodations: How to know what your child needs

Dyslexia and accommodations- ADA guidelines for school and work

Examples of accommodations and modifications

Modification for students with Down syndrome

Section 504 and Discrimination

Section 504: sample accommodations and modifications

What are school accommodations and modifications for students with Asperger’s?

10 Important Facts On Trisomy 18

Today is National Trisomy Awareness Day. Below are 10 important facts on Trisomy 18.

  • It is also known as Edwards Syndrome
  • It is a condition caused by an error in cell division
  • An extra chromosome in 18 develops
  • Occurs in 1 out of every 2500 pregnancies in the United States
  • It is 1 in 6000 live births
  • Only 50% of babies who are carried to term will be born alive
  • Children are often born with heart defects
  • Features include a small head, small jaw, clenched fists and severe intellectual disabilities
  • It is named after John Hilton Edwards, who first described the syndrome in 1960
  • It affects different organ systems

 

15 Resources on Cerebral Palsy and Adulthood

Cerebral palsy is a condition caused by damage to the specific areas of the brain. Cerebral palsy refers to the brain and palsy to muscle weakness. Cerebral palsy is a syndrome of motor impairment with posture and movement disorder. It is a non-progressive disorder, however, as a person begins to age, muscle and skeletal problems begin to worsen resulting in more pain, discomfort and limited mobility. Due to muscle flexibility, strength and endurance issues, there is a greater risk of falls and injuries. The following articles includes information on understanding how aging and adulthood affect people with cerebral palsy.

5 common challenges for adults with cerebral palsy- Made For Movement Blog

Adults and cerebral palsy– Cerebral Palsy Organization

Adults with Cerebral Palsy- Cerebral Palsy Foundation

Aging with Cerebral Palsy and Chronic Pain– The Mighty

Care of adults with cerebral palsy-American Academy for Cerebral Palsy and Developmental Medicine

Cerebral Palsy and aging– Developmental Medicine and Child Neurology

Cerebral palsy and transitioning to adulthood-Cerebral Palsy Alliance

Cerebral Palsy effects through lifespan-Physiopedia

Cerebral Palsy in Adulthood– Everyday Health

Cerebral Palsy patients provide rare insight into aging– Cerebral Palsy News Today

Cerebral palsy symptoms in Adulthood- Healthfully

Living as an adult with cerebral palsy– Healthline

Living with cerebral palsy as an adult– WebMD

Progression and Correction of Deformities in Adult with Cerebral Palsy-ACNR

The good, the bad, and the ugly facts about adult cerebral palsy-Karen Pape

25 Developmental Disability Links and Resources You Should Know About

March is Developmental Disabilities Awareness month! Although I blogged  the definition of developmental disabilities here, I wanted to give you more information besides the Federal regulation. Quite often, people are confused between the definition of an intellectual disability and a developmental disability.

A developmental disability is described as an assortment of chronic conditions that are due to mental or physical impairments or both. For example, you may have a child or an adult with an intellectual disability or perhaps a person diagnosed with cerebral palsy and an intellectual disability. It is also considered a severe and chronic disability that can occur up to the age of 22, hence the word developmental. A developmental disability can occur before birth such as genetic disorders (i.e. cri du chat, fragile x syndrome,) or chromosomes ( i.e. Down syndrome, Edwards syndrome); during birth (lack of oxygen) or after birth up to the age of 22 (i.e. head injuries, child abuse or accidents).

The disability is likely to occur indefinitely meaning the person will require some type of ongoing service throughout their lives. Finally, the person must show limitations in 3 or more of the following areas of major life activities:

  1. Self-care– brushing teeth, hand-washing and combing hair independently
  2. Receptive and expressive language-ability to understand someone talking and to also be understood
  3. Learning– ability to read and write with understanding
  4. Mobility-ability to move around without any assistance
  5. Self-direction– time management, organization
  6. Capacity for independent living– requiring no supervision
  7. Economic self-sufficiency – having a job  and purchasing what one needs

The following are links to articles on various types of developmental disabilities including resources with facts and statistics, organizations, and sign and symptoms.

22q11.2 Deletion Syndrome

27 things to know about Fragile X Syndrome

ADHD- facts and statistics

Angelman Syndrome

Angelman syndrome resources

Cri Du Chat Resources

Developmental disability acronyms you should know 

Developmental disability awareness ribbons

Down syndrome-facts and statistics

Down syndrome timeline

Duchenne Muscular Dystrophy

Early Intervention- Resources and Information

Edward Syndrome Resources

Global developmental delays

Intellectual Disability Resources

Over 30 online resources on Rett syndrome

Pervasive DD-NOS

Prader Willi Syndrome Resources

Resources for teaching students with Down syndrome

Ring Chromosome 22 Resources

Teaching self-regulation and autism spectrum disorder

Things to know about Angelman Syndrome

Turner Syndrome Characteristics

What is Prader Willi Syndrome?

William-Beuren Syndrome Resources

Intellectual Disabilities And Epilepsy

According to the Epilepsy Foundation, epilepsy is the fourth most common neurological disorder and affects people of all ages. In fact, 1 in 26 people have seizures and while people who are diagnosed with epilepsy may have no other problems, this is not the case for children and adults with an intellectual and developmental disability where the rates are much higher.

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It is estimated that 30% of children with epilepsy also have another type of disability. Some studies show that children with an intellectual disability and cerebral palsy, had a 35% chance of developing epilepsy, children with an intellectual disability alone had an 8% chance and children with a brain injury occurring after birth stood a 75% chance of developing epilepsy. Statistically, the risky of a child with a developmental disability experiencing an unprovoked seizure by age 5 is 4 times likely than the general population. It is estimated 1.8% of U.S. adults have epilepsy compared to 22% among people with intellectual disabilities.

People with intellectual disabilities tend to also have worse prognosis with adults having a higher rate of death including Sudden Unexplained Death In Epilepsy (SUDEP).

Epilepsy

Epilepsy is a chronic disorder with recurrent unprovoked seizures. According tot he National Institute of Neurological Disorders and Stroke (NINDS), epilepsys are a spectrum of brain disorders ranging from severe, life-threatening to ones that are more benign. The International League Against Epilepsy created a new definition of epilepsy. A person is considered to have epilepsy if they meet any of the following conditions:

  1. At least two provoked (or reflex) seizures occurring greater than 24 hours apart.
  2. One Unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years.
  3. Diagnosis of an epilepsy syndrome

A seizure is defined as an event and epilepsy is the disease involving recurrent unprovoked seizures.

Intellectual Disability

According to DSM-5, an intellectual disability is a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual social, and practical domains including deficits in intellectual functions such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experiences.  The severity levels range from mild to profound.

Although there is a high relationship between epilepsy and an intellectual disability, little research has been conducted on safe prescribing practices of an antiepileptic drugs for people with intellectual disabilities. What is known about epilepsy and an intellectual disability is that more severe disabilities are typically caused by damage to the brain

Why is it important to discuss?

Given the large number of people with an intellectual disability and epilepsy, treatment may be more complicated due to multiple impairments including people with a diagnosis of autism, intellectual disability and epilepsy. More research needs to occur which will help to reduce morbidity rates and help to develop accurate guidelines.

Cerebral Palsy and Co-occuring Disorders

Cerebral Palsy is defined as a group of disorders of movement and posture causing limitations due to abnormal development in the brain. According to the Centers for Disease Control and Prevention (CDC), many children and adults with cerebral palsy also had at least one co-occurring condition and in some cases more than one. for example, it is not unusual for and individual to have a diagnoses of cerebral palsy with a co-occurring condition of epilepsy and an intellectual disability and associative  issues with an eating disorder.

Understanding both co-occurring conditions and associative disorders is essential in order to develop an effective teaching strategy.

associative issues include aspiration, dysphagia, digestive issues, seizures, intellectual disability, sleep disorder, and speech impairments.

The following links and articles includes information that contain research studies, articles and practical information.

 

Cerebral Palsy and Epilepsy– Cerebral Palsy Guidance

Cerebral Palsy and Seizures– Cerebral Palsy Guidance

Cerebral Palsy and Speech Therapy– Cerebral Palsy Group

Children with spastic cerebral palsy experience lower leg fatigue when walking study shows- Cerebral Palsy News Today

Common health problems associated with cerebral palsy- My Child Without Limits

Communication and swallowing issues for adults with cerebral palsy-EPI

Difficulties in swallowing and coughing in spastic cerebral palsy focus of study– Cerebral Palsy News Today

Digestive health tips for kids with cerebral palsy-Sarah Halstead

Gastrointestinal and nutritional issues in cerebral palsy-practicalgastro.ocom

How does cerebral palsy affect people?-Cerebral Palsy Alliance

Prevalence of cerebral palsy and intellectual disability among children- NCBI

Sleep disorders in kids with cerebral palsy often remain untreated study suggest– Cerebral Palsy News today

Sleep issues among children with cerebral palsy-CP-NET

Seizures in children with cerebral palsy and white matter injuries-Pediatrics

Understanding more about cerebral palsy and seizures– Murdoch Children’s Research Institute

Resources

Centers for Disease Control and Prevention

National Institute of Neurological Disorders and Stroke

New Study Links Hyperfocus and ADHD

Published By: ADDitude Magazine
Written By: Neil Petersen

A newly published study has pried the lid off the mysterious phenomenon of “hyperfocus,” tying it inextricably to symptoms of attention deficit disorder (ADHD or ADD) in adults.

Though not included in the official DSM-5 diagnostic criteria for ADHD, hyperfocus is a condition familiar to many individuals with ADHD who report becoming intensely focused on activities they find rewarding or interesting.

Anecdotally, we have known that, when a person with ADHD experiences hyperfocus, his or her attention becomes laser-like. They lose track of time, and distractions fade away. Switching to other tasks becomes difficult. But from a scientific standpoint, we’ve known very little about hyperfocus, most notably whether it is truly more prevalent among people with ADHD. To read the rest of the story, click here