Glossary of terms for insurance transition

These words are important to know for Insurance transition


For Medicaid purposes, assets include cash, savings accounts, checking accounts, investments, stocks, bonds, etc.). 


This refers to any expense for which an insurance plan will pay. 


This is a payment that an individual will be required to make for all health services in addition to what is paid by that individual’s insurance company. 


This is the amount of money that an individual will have to pay on top of their annual insurance plan costs before the coverage of their specific plan begins to cover their medical care. Sometimes there are certain expenses, like preventive care, that will be covered without the deductible first being met.


A person that relies on another for over half of their income. Typically this is a child relying on their parents for financial support.

Durable medical equipment: 

Any assistive aid (e.g. wheelchair, walker, bath chair, crutches, etc.)


Homebound means an individual is unable to leave the home except for short and infrequent trips outside the home with the assistance of another person.


For Medicaid purposes, any income that comes from anywhere that a person applying to Medicaid receives is counted as income (e.g. employment, alimony, Supplemental Security Income, Social Security Disability Income, stock dividends etc.). 


An individual that is not claimed on another’s taxes as tat individual provides for the majorriy of their own financial livelihood.

In-home Care:

A service provided through insurance which pays a person(s) to assist an individual with two or more daily tasks.


In-network refers to healthcare facilities or providers that have negotiated with an insurance company to be a part of an individual’s healthcare plan in order to provide their services to the individual at no additional cost to them beyond their insurance premium.  


Insurance is a contract between a company and an individual that protects that individual against the financial burden that could build up due to medical expenses.

Medical supplies: 

Medical supplies is the umbrella term for a range of materials that are available for  the use of an individual in order to perform necessary healthcare tasks (e.g. incontinence supplies, ostomy supplies, injection supplies, personal protection equipment).


The amount an individual pays for the return of insurance coverage.


The insurance plan that kicks in/covers costs first.

Private Insurance:

A coverage plan purchased by an individual or employer from a private company that is not the state or federal government.


With regard to medical expenses, “out-of-pocket” expenses means the money an individual is required to pay because their insurance plan does not cover the cost.


The insurance plan that covers some or all of the remaining cost that the primary insurance did not cover.

Social Security Disability Income (SSDI):

An entitlement program from the Social Security Administration for people with disabilities based on their employment record and age.

Supplemental Security Income (SSI):

A tested program from the Social Security Administration for people with disabilities based on a test that determines their eligibility level based on their assets and income.

Diagnosis: Neurodevelopmental Disorders

Including Autism Spectrum Disorder, Learning Disabilities, and Tourette Syndrome

According to Nature:

Neurodevelopmental disorders are a group of disorders in which the development of the central nervous system is disturbed. This can include developmental brain dysfunction, which can manifest as neuropsychiatric problems or impaired motor function, learning, language or non-verbal communication.

Downloadable Resources

Adult Sibling Toolkit: A Planning Guide for Siblings of Adults with Intellectual and Developmental Disabilities
Autism Spectrum and Neurodevelopmental Disorders
Neurodevelopmental Disorders and Adaptive Functions

Autism Spectrum Disorders

According to the CDC:

Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. CDC is committed to continuing to provide essential data on ASD, search for factors that put children at risk for ASD and possible causes, and develop resources that help identify children with ASD as early as possible.

Downloadable Resources

A Parent’s Guide to Assessment
Alzheimer’s Disease & Down Syndrome: A Practical Guidebook for Caregivers
Autism Spectrum Disorder (Spanish Version here)
Autism, My Sibling, and Me: A Guide for Children with an Autistic Sibling
Life as an Autism Sibling: A Guide for Teens
Life Journey Through Autism: A Guide to Safety
Life Journey Through Autism: A Guide for Transition to Adulthood (Spanish Version Here)
Life Journey through Autism: Navigating the Special Education System
Next Steps: A Guide for Families New to Autism
Puberty and Children on the Autism Spectrum


Autistic Girls Going Undiagnosed Due to ‘Camouflaging’ Behaviour
Autism Spectrum Disorder: Engaging in a Social World
Depression and the Autism Spectrum
How to Prepare for a DDA Assessment
Is a Therapy Dog Right for Your Child with Autism


Autism Case Training Landing Page
Autism Focused Intervention Resources and Modules (AFIRM)
CDC: Autism Spectrum Disorder (ASD)
Northwest Autism Center
Organization for Autism Research (OAR)
Washington Autism Alliance and Advocacy (WAAA)

Washington State Resources

ALIGN: Advocates of Lopez Island Gathering for Neurodiversity
Autism Task Force of Greater Grays Harbor

Penarc – the Arc of Clallam, Jefferson, Kitsap and Mason Counties
Vietnamese Family Autism Advisory Board

Learning Disabilities

According to the Learning Disabilities Association of America:

Learning disabilities are due to genetic and/or neurobiological factors that alter brain functioning in a manner which affects one or more cognitive processes related to learning. These processing problems can interfere with learning basic skills such as reading, writing and/or math. They can also interfere with higher level skills such as organization, time planning, abstract reasoning, long or short term memory and attention. It is important to realize that learning disabilities can affect an individual’s life beyond academics and can impact relationships with family, friends and in the workplace.

Downloadable Resources

Accommodations for Students with Dyslexia
Charting the Course: Supporting the Career Development of Youth with Learning Disabilities
Dyslexia and the Brain (Spanish Version Available Here)
Dyslexia Basics (Spanish Version Available Here)
Dyslexia Testing and Evaluation
How Technology Can Help Your Child with a Learning Disability Be More Independent
IDA Dyslexia Handbook
Understanding Dysgraphia (Spanish Version Available Here)


Dyslexia Screening and Interventions: State Requirements and Resources
Dyslexia, Dysgraphia and Dyscalculia: Homeschooling The 3 D’s
My Child, the Athlete: Coaching a Child with Hidden Disabilities
What Is Dysgraphia?


International Dyslexia Association
Learning Disabilities Association of America

Tourette Syndrome

According to the Mayo Clinic:

Tourette syndrome is a disorder that involves repetitive movements or unwanted sounds (tics) that can’t be easily controlled. For instance, you might repeatedly blink your eyes, shrug your shoulders or blurt out unusual sounds or offensive words.

Tics typically show up between ages 2 and 15, with the average being around 6 years of age. Males are about three to four times more likely than females to develop Tourette syndrome.

Although there’s no cure for Tourette syndrome, treatments are available. Many people with Tourette syndrome don’t need treatment when symptoms aren’t troublesome. Tics often lessen or become controlled after the teen years.

Downloadable Resources

A Children’s Guide to Tourette Syndrome (Spanish version available here)
Bridging the Gap Between Tourette Syndrome and Public Health
CDC: Tourette Syndrome
Living with Tourette & Tic Disorders: Guide for Patients and Families (Spanish version available here)
Tics and Tourette Syndrome
Tics and Tourette Syndrome: Essential Facts for Patients
What is Tourette Syndrome?


For Author Kevin Wilson, Writing Offers A Brief Reprieve From Tourette’s
My Life With Tourette’s Syndrome


National Institute of Neurological Disorders and Stroke: Tourette Syndrome Information Page
Tourette Association of America

Diagnosis: Personality Disorders

Personality Disorders

Including Borderline Personality Disorder, Obsessive-Compulsive Disorder, and Schizophrenia 

According to the Mayo Clinic:

A personality disorder is a type of mental disorder in which you have a rigid and unhealthy pattern of thinking, functioning and behaving. A person with a personality disorder has trouble perceiving and relating to situations and people. This causes significant problems and limitations in relationships, social activities, work and school.

General Personality Disorder Information

MedlinePlus: Personality Disorders
What Is a Personality Disorder?
What Types of Personality Disorder are There?

Borderline Personality Disorder

The National Institute of Mental Health states:

Borderline personality disorder is an illness marked by an ongoing pattern of varying moods, self-image, and behavior. These symptoms often result in impulsive actions and problems in relationships. People with borderline personality disorder may experience intense episodes of anger, depression, and anxiety that can last from a few hours to days.

Downloadable Resources

Borderline Personality Disorder (from NIH)
Borderline Personality Disorder (from NAMI)
Your Health in Mind: Borderline Personality Disorder


Borderline Personality Disorder in Adolescents: The He-Who-Must-Not-Be-Named of Psychiatry
Borderline Personality Disorder in Teens
Mood Lability and Borderline Personality Disorder
What Is Borderline Personality Disorder?


Borderline Personality Disorder
National Alliance on Mental Illness: Borderline Personality Disorder

Obsessive-Compulsive Disorder

According to the Mayo Clinic:

Obsessive-compulsive disorder (OCD) features a pattern of unwanted thoughts and fears (obsessions) that lead you to do repetitive behaviors (compulsions). These obsessions and compulsions interfere with daily activities and cause significant distress.

You may try to ignore or stop your obsessions, but that only increases your distress and anxiety. Ultimately, you feel driven to perform compulsive acts to try to ease your stress. Despite efforts to ignore or get rid of bothersome thoughts or urges, they keep coming back. This leads to more ritualistic behavior — the vicious cycle of OCD.

Downloadable Resources

Got OCD? A Guide for Teens
How to Help Your Child: A Parent’s Guide to OCD
Obsessive Compulsive Disorder in Children and Teenagers
Obsessive-Compulsive Disorder: When Unwanted Thoughts or Irresistible Actions Take Over (Spanish Version)
PANDAS Fact Sheet
Understanding Obsessive-Compulsive Disorder for Young Adults
What is OCD? Facts About Obsessive Compulsive Disorder
What You Need To Know About OCD (Chinese Version) (Russian Version) (Spanish Version)


Living With OCD: One Woman’s Story
Obsessive-Compulsive Disorder (OCD)
Obsessive-Compulsive Disorder In Children And Adolescents


Brain & Behavior Research Institute: Obsessive-Compulsive Disorder (OCD)
International OCD Foundation
NIMH: Obsessive-Compulsive Disorder

Schizophrenia and Psychosis

As stated by the National Institute of Mental Health:

Schizophrenia is a chronic and severe mental disorder that affects how a person thinks, feels, and behaves. People with schizophrenia may seem like they have lost touch with reality. Although schizophrenia is not as common as other mental disorders, the symptoms can be very disabling.

Downloadable Resources

Early Psychosis: What’s Going On and What Can You Do?
Encouraging People to Seek Help for Early Psychosis
Schizophrenia (Spanish Version Available Here)
Understanding a First Episode of Psychosis for Caregivers
Understanding a First Episode of Psychosis for Young Adults
Understanding Psychosis (Spanish Version Available Here)
What is Early and First-Episode Psychosis?


Frequently Asked Questions about Schizophrenia
NAMI: Schizophrenia
What Is Schizophrenia?

Diagnosis: Mood Disorders

Including Anxiety Disorder, Bipolar Disorder, and Depression

General Mood Disorder Resources

According to the Mayo Clinic:

If you have a mood disorder, your general emotional state or mood is distorted or inconsistent with your circumstances and interferes with your ability to function. You may be extremely sad, empty or irritable (depressed), or you may have periods of depression alternating with being excessively happy (mania).
Anxiety disorders can also affect your mood and often occur along with depression. Mood disorders may increase your risk of suicide.

Downloadable Resources

Getting Started: A Guide for Parents of Children with Mood Disorders
Gizmo’s Pawsome Guide to Mental Health
Helping a Friend or Family Member with Depression or Bipolar Disorder
Mental Health and School Avoidance: What parents need to know


Anxiety and Depression Association of America (ADAA)
Mental Health America
Mental Health First Aid
National Alliance on Mental Health (NAMI)
Overview of Mood Disorders

Anxiety Disorder

According to the CDC:

Anxiety may present as fear or worry, but can also make children irritable and angry. Anxiety symptoms can also include trouble sleeping, as well as physical symptoms like fatigue, headaches, or stomachaches. Some anxious children keep their worries to themselves and, thus, the symptoms can be missed.

Downloadable Resources

Anxiety Disorders in Children
Crisis Management Plan: Support at Home for Children and Youth with Mental Health Needs
Generalized Anxiety Disorder
Panic Disorder: When Fear Overwhelms
Social Anxiety Disorder
Treating Anxiety Disorders
Understanding Anxiety Disorders for Young Adults
Understanding Anxiety Disorders for Caregivers


Anxiety in Children
Ideas to Support Children and Families Impacted by Abuse, Trauma and Divorce
What Caused my Social Anxiety
What to Do (and Not Do) When Children Are Anxious


Anxiety and Depression Association of America (ADAA)
MedLinePlus: Anxiety
My Anxiety Plan (MAP) for Children and Teens
NIMH: Anxiety Disorders

Bipolar Disorder

According to the National Institute of Mental Health:

Bipolar disorder (formerly called manic-depressive illness or manic depression) is a mental disorder that causes unusual shifts in mood, energy, activity levels, concentration, and the ability to carry out day-to-day tasks.
There are three types of bipolar disorder. All three types involve clear changes in mood, energy, and activity levels. These moods range from periods of extremely “up,” elated, irritable, or energized behavior (known as manic episodes) to very “down,” sad, indifferent, or hopeless periods (known as depressive episodes). Less severe manic periods are known as hypomanic episodes.

Downloadable Resources

Bipolar Disorder (Spanish version here)
Bipolar Disorder in Children and Teens (Spanish version here)
Bipolar Disorder in Teens and Young Adults: Know the Signs
Bipolar Disorder: Make the Family Connection
Understanding Bipolar Disorder for Caregivers
Understanding Bipolar Disorder for Young Adults


Bipolar Disorder in Children: Is it Possible?
Bipolar Disorder in Teens
Living with Depression or Bipolar Disorder?
Mental Health Education and Support at School can be Critical


Depression and Bipolar Support Alliance
National Alliance on Mental Illness: Bipolar Disorder


As the Mayo Clinic states:

Depression is a mood disorder that causes a persistent feeling of sadness and loss of interest. Also called major depressive disorder or clinical depression, it affects how you feel, think and behave and can lead to a variety of emotional and physical problems. You may have trouble doing normal day-to-day activities, and sometimes you may feel as if life isn’t worth living.

More than just a bout of the blues, depression isn’t a weakness and you can’t simply “snap out” of it. Depression may require long-term treatment. But don’t get discouraged. Most people with depression feel better with medication, psychotherapy or both.

Downloadable Resources

Depression Basics (Spanish Version here)
Finding Peace of Mind: Treatment Strategies for Depression
Getting Started: A Guide for Parents of Children with Mood Disorders
Helping a Friend or Family Member with Depression or Bipolar Disorder
Preventing Suicide: A Technical Package of Policy, Programs, and Practices
Questions About Suicide
Suicide & Safe Storage of Firearms
Teen Depression (Spanish Version here)
Understanding Depression for Young Adults
What are the “ROAM” Signs of Depression?


Common Myths About Teen Suicide
Depression and the Autism Spectrum
Eli Harkness: I Survived a Suicide Attempt
Speaking Up is the First Step to Overcoming Depression
Suicide Prevention Tips


Anxiety and Depression Association of America (ADAA)
Depression and Bipolar Support Alliance (DBSA)
Families for Depression Awareness
National Institute on Mental Health: Depression
National Suicide Prevention Lifeline

Diagnosis: Behavorial Health

Including ADHD, Eating Disorders, Oppositional Defiant Disorder, PTSD, and Substance Use Disorder

According to IBH:

Behavioral health describes the connection between the health and well-being of the body and the mind. This can include a variety of areas – everything from eating habits to drinking habits to exercise and various mental health challenges. Behavioral health can extend to psychiatric conditions, marriage and family counseling, and addiction treatments.

General Resources

Office of Behavioral Health Advocacy Brochure (Spanish Version Here)

Attention Deficit/Hyperactivity Disorder (ADHD)

The American Psychiatric Association:

Attention-deficit/hyperactivity disorder (ADHD) is one of the most common mental disorders affecting children. ADHD also affects many adults. Symptoms of ADHD include inattention (not being able to keep focus), hyperactivity (excess movement that is not fitting to the setting) and impulsivity (hasty acts that occu

r in the moment without thought).

An estimated 8.4 percent of children and 2.5 percent of adults have ADHD. ADHD is often first identified in school-aged children when it leads to disruption in the classroom or problems with schoolwork. It can also affect adults. It is more common among boys than girls.

Downloadable Resources

Attention Deficit/Hyperactivity Disorder Fact Sheet
Attention-Deficit/ Hyperactivity Disorder (ADHD): The Basics (Spanish Version Here)
Identifying and Treating Attention Deficit Hyperactivity Disorder: A Resource for School and Home
Understanding Attention-Deficit/Hyperactivity Disorders for Caregivers


Conduct Disorder in Teens with ADHD: Signs, Symptoms, Interventions
Evaluations Part 1: Where to Start When a Student Needs Special Help at School
Ideas and Resources to Support Your Child’s Behavior at School


Attention Deficit Disorder Association (ADDA)
Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)
Learning Disabilities Association of America (LDA)

Eating Disorders

According to the Mayo Clinic:

Eating disorders are serious conditions related to persistent eating behaviors that negatively impact your health, your emotions and your ability to function in important areas of life. The most common eating disorders are anorexia nervosa, bulimia nervosa and binge-eating disorder.

Most eating disorders involve focusing too much on your weight, body shape and food, leading to dangerous eating behaviors. These behaviors can significantly impact your body’s ability to get appropriate nutrition. Eating disorders can harm the heart, digestive system, bones, and teeth and mouth, and lead to other diseases.

Eating disorders often develop in the teen and young adult years, although they can develop at other ages. With treatment, you can return to healthier eating habits and sometimes reverse serious complications caused by the eating disorder.

Downloadable Resources

Eating Disorders
Eating Disorders: About More Than Food (Spanish version available here)
Eating Disorders in Children and Adolescents
Eating Disorders – Your Guide
Facts About Eating Disorders: What The Research Shows
Let’s Talk About Eating Disorders (Spanish version available here)


A Patient’s Guide to Eating Disorders
Keep Fighting For Recovery
Losing Sight of Myself: Overcoming Bullying and Eating Disorders


Eating Disorder Hope
National Alliance on Mental Health: Eating Disorders
National Eating Disorders Association (NEDA)
National Institute of Mental Health: Eating Disorders

Oppositional Defiant Disorder (ODD)

According to Johns Hopkins University:

Oppositional defiant disorder (ODD) is a type of behavior disorder. It is mostly diagnosed in childhood. Children with ODD are uncooperative, defiant, and hostile toward peers, parents, teachers, and other authority figures. They are more troubling to others than they are to themselves.

Downloadable Resources

Children with Oppositional Defiant Disorder
Info Sheet: Oppositional Defiant Disorder (ODD)
Oppositional Defiant Disorder
Oppositional Defiant Disorder: Recommendations for Teachers and Parents


What Is Oppositional Defiant Disorder?
What You Can Do to Change Your Child’s Behavior


Behavior or Conduct Problems in Children
Conduct Disorders
Oppositional Defiant Disorder (ODD) in Children
Oppositional Defiant Disorder Treatment

Post-Traumatic Stress Disorder

As stated by the Mayo Clinic:

Post-traumatic stress disorder (PTSD) is a mental health condition that’s triggered by a terrifying event — either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.

Most people who go through traumatic events may have temporary difficulty adjusting and coping, but with time and good self-care, they usually get better. If the symptoms get worse, last for months or even years, and interfere with your day-to-day functioning, you may have PTSD.

Getting effective treatment after PTSD symptoms develop can be critical to reduce symptoms and improve function.

Downloadable Resources

Childhood Traumatic Grief: Information for Parents and Caregivers
Dissociation and PTSD: What Parents Should Know
Helping Children and Adolescents Cope With Disasters and Other Traumatic Events (Spanish Version Here)
Mental Health Issues and Conditions in Children and Youth Exposed to Human-caused Disasters
Post-Traumatic Stress Disorder (Spanish Version Here)
Posttraumatic Stress Disorder
The Heart of Learning and Teaching: Compassion, Resiliency, and Academic Success


Coping with Traumatic Events
Helping a Family Member Who Has PTSD
Helping Children Cope with Emergencies
What Is Posttraumatic Stress Disorder?


National Child Traumatic Stress Network
National Institute of Mental Health: Post-Traumatic Stress Disorder
Post-traumatic Stress Disorder in Children
Veterans Affairs: National Center for PTSD

Substance Use Disorder (SUD)

The Merck Manual states:

Substance use disorders are a type of substance-related disorder that involve a pathologic pattern of behaviors in which patients continue to use a substance despite experiencing significant problems related to its use. There may also be physiologic manifestations, including changes in brain circuitry.

The substances involved are typically members of the 10 classes of drug that typically cause substance-related disorders. These substances all directly activate the brain reward system and produce feelings of pleasure. The activation may be so intense that patients intensely crave the substance and neglect normal activities to obtain and use it.

The common terms “addiction,” “abuse,” and “dependence” have often been used with regard to substance use, but these terms are too loosely and variably defined to be very useful in systematic diagnosis. Substance use disorder is more comprehensive and has fewer negative connotations.

Downloadable Resources

Drugs, Brains, and Behavior: The Science of Addiction (Spanish Version Here)
Medicaid-Funded Behavioral Health Treatment
Principles of Substance Abuse Prevention for Early Childhood
Step by Step Guides to Finding Treatment for Drug Use Disorders
Substance Misuse Prevention for Young Adults
Why You Should Talk with Your Child About Alcohol and Other Drugs


Drugs and the Brain
How Addiction Affects The Transgender Community
Understanding Drug Use and Addiction


Drug Facts for Teens
Mental Illness and Substance Use in Young Adults
National Institute on Drug Abuse
Recovery Research Institute
Sober Families
Substance Abuse and Mental Health Services Administration (SAMHSA)

Online Library

General Health

Color Me Safe – A coloring book designed for children ages four to seven about safety

Eat Play Grow – creative activities for a healthy start designed for ages 2-5

How to Help Individuals with Disabilities be Safe in the Community – by Dr. Courtney Moffatt

Trinka and Sam Fighting the Big Virus: Trinka, Sam, and Littletown Work Together – A  book about COVID

Health Conditions and Disorders

Attention Deficit/Hyperactivity Disorder Fact Sheet – Learn about ADHD and what to do if you have concerns

Living With Autism – A guide for Families New to Autism

Down Syndrome – Understanding the Genetic Condition

Dyslexia Testing and Evaluation – Information from the International Dyslexia Association

Fragile X Syndrome – Facts About Fragile X Syndrome

Intellectual Disability Fact Sheet – Basic information from the CDC

Meeting the Mental Health Needs of People with Intellectual Disabilities – Guidebook from the Washington DDA

Behavioral Health

Children and Mental Health: Is This Just a Stage? – A resource for concerned parents

Crisis Management Plan – Support at Home for Children and Youth with Mental Health Needs

Navigating Through Challenging Behaviors – Information from DSHS intended for health care works but also applicable to family members and caregivers

Substance Misuse Prevention for Young Adults – describes relevant research findings, examines emerging and best practices, identifies knowledge gaps and implementation challenges

Tips for Talking to Youth Who Are Under Stress – Understanding and addressing stress in youth

Self-Advocacy and Planning

Accessible Instructional Materials (AIM) (Spanish Version Here) – Basics for Families

Adult Sibling Toolkit – A guide for siblings of adults with intellectual and developmental disabilities

MCO Report Card – Prepared by Apple Health

Online College Programs – Questions to Consider for Students with Disabilities

Self-Advocate’s Guide to Choosing a Post-Secondary Program – Charting Your Course Through a New Landscape

The Supplemental Security Income Application Process – Includes step-by-step instructions

Transitions: Life after high school – Tools for deciding on future plans

Understanding the Special Educational Process – A flowchart to understand decisions and options


General Health

Arc of Washington – Supports for individuals with intellectual/developmental disabilities and their families

Charting the LifeCourse – Creates a framework and tools to organize ideas and solve potential life problems

Easter Seals – Resources for individuals with disabilities, veterans, seniors and their families – Information from the American Academy of Pediatrics

Informing Families – Offers news and information to those impacted by developmental disabilities

National Healthy Start Association – Find your local Head Start program

Pediatric Dentistry – Common Oral Conditions & Treatment Options

Washington Healthcare Exchange – Find healthcare plans, including Apple Health

Washington State Department of Health – Contains resources and healthcare information

We Can! – Ways to Enhance Children’s Activities and Nutrition

Health Conditions

American Cancer Society – Information on types of cancer, current research, and treatment options

Brain Injury Alliance of Washington – Support, information, and hope for those affected by brain injury

Cystic Fibrosis Foundation – Help and information for families affected by CF

Epilepsy Foundation – Improves and save lives through our community services, public education, access to care campaign, research initiatives, and new therapies funding

Learning Disabilities Association of America – Information on learning disabilities, practical solutions, and a comprehensive network of resources

National Down Syndrome Society – Advocates for all individuals with Down syndrome

National Fragile X Foundation – Provides information, support, and research news

PremeeCare – Supporting families of infants born preterm through education, support, and resources

Washington Autism Alliance and Advocacy – Legal advocacy and information for families with autistic members

Washington State Hands & Voices – Supports families with children who are deaf, deaf-blind or hard of hearing


Dads MOVE – Seeks to strengthen the father’s role in raising children with behavioral health needs through education, peer support and advocacy

Father’s Network – Connecting men who are fathers of special needs children with resources and support

Keep Connected – Ideas, activities, and experiences to help build strong family relationships

Mommies of Miracles – Support group for mothers of children who have medical complexities, life-limiting conditions, or developmental disabilities

National Center for Pyramid Model Innovations – Social/emotional education for children information

National Foster Parent Association – Supports and resources for foster families

PAVE – Provides support, training, information and resources to empower and give voice to individuals, youth and families impacted by disabilities

Parent to Parent – County-based programs that provide emotional support and information to families of children with special needs and/or disabilities

PTA – The National Parent Teacher Association’s mission is to make every child’s potential a reality by engaging and empowering families and communities to advocate for all children

Raising Multiples – Provider of support, education and research on higher-order multiple births

Watch Me Grow in Washington State – Social media avenue to get more health and safety information for your child

Glossary of Medical, Governmental, and Disability Terms

504 Plan – A plan developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment. While a 504 plan is offered in primary and secondary grades, section 504 of The Rehabilitation Act still protects students for accommodations into college. They won’t have a plan but the law still applies.

Ableism – Ableism is discrimination based on a person’s disability.  It is the belief that someone with a disability is somehow not as important or does not deserve the same opportunities as those without disabilities.  Often it is expressed as pity towards individuals with disabilities instead of understanding and inclusion.

ACEs – Adverse Childhood Experiences are traumatic events that occur in childhood and often affect later health. These are events that can fundamentally change the way in which a developing brain works, causing long term damage if not addressed.

ADA – Americans with Disabilities Act. Signed into law in 1990, it prohibits discrimination based on disability.

ASD – Autism Spectrum Disorder encompasses several developmental disabilities, including Autism, Asperger Syndrome, and Pervasive Developmental Disorder. Rather than differentiate these disorders, some doctors now view them as different varieties of the same disorder.

Behavioral Health – Behavioral health describes the connection between the health and well-being of the body and the mind. This can include eating habits, drinking habits, exercise, and various mental health challenges. Behavioral health can extend to psychiatric conditions, family counseling, and addiction treatments.

Best Practice – A method or technique that has been generally accepted as superior to any alternatives because it produces results that are superior to those achieved by other means or because it has become a standard way of doing things.

CANS – Child and Adolescent Needs and Strengths. The CANS is a clinical assessment tool that communicates the needs and strengths of the child and the family and is used to inform the child’s and family’s case. They are used for youth behavioral health treatment plans.

CBT – Cognitive Behavioral Therapy, which is aimed at changing behavior through self-awareness. Considered a “solutions-oriented” form of talk therapy, CBT rests on the idea that thoughts and perceptions influence behavior.

CLIP – Children’s Long-term Inpatient Program, an intensive program for youth with extreme behavioral disorders. Treatments in these facilities often take several months and are considered a last resort.

Co-payment – A co-payment is the amount of money an individual needs to pay for a medical visit or procedure when they have medical insurance. An example of this would be a $25 fee for a routine doctor visit.

DCYF – Department of Children, Youth and Families. Within Washington State, they are responsible for Child Protective Services, adoption and foster matters, early learning, and developmental support programs.

Deductible – A medical insurance deductible is the amount of money that an individual must pay for a medical expense (including medical procedures) before their insurance “kicks in” and pays for the rest. For instance, an insurer may not pay for a medical procedure that costs less than $500, while they will pay any expenses beyond the $500 that an individual is required to pay for a procedure.

Developmental Disability – Developmental disabilities are a group of conditions due to an impairment in physical, learning, language, or behavior areas. About one in six children in the U.S. have one or more developmental disabilities or other developmental delays.

DSHS – Department of Social and Health Services. Within the state of Washington, they are responsible for several services, including child support, housing assistance, vocational rehabilitation, food stamps, and some disability support services.

EBP – Short for Evidence Based Practice. These are scientifically proven practices and are the basis of most physical and psychological health care.

Epigenetics – An emerging scientific study focusing on the changes in organisms caused by modification of gene expression rather than alteration of the genetic code itself.

Family Initiated Treatment (FIT) -Under FIT parents of youth under 18 are able to consent on behalf of adolescents who meet medical necessity for behavioral health treatment.

Fee for Service (FFS) – The traditional healthcare payment model where services paid for separately. Payment is dependent on the quantity of care, rather than quality of care.

HCA – Health Care Authority is the purchaser for Apple Health in Washington State. HCA also purchases health care for the Public Employees Benefits Board (PEBB) Program, the School Employees Benefits Board (SEBB) Program, and the COFA Islander Health Care Program.

HMO – Health Maintenance Organization, which are the most common form of MCOs. HMOs are large health care companies. They comprise of many hospitals and providers with a central financial system. Enrollees in an HMO are required to use specific, in-network plan providers or hospitals.

IDEA – The Individuals with Disabilities Education Act (IDEA) is a law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children.

IEP – An Individualized Education Program (IEP) is a written statement of the educational program designed to meet a child’s individual needs. Every child who receives special education services must have an IEP.

IFSP – An Individual Family Service Plan (IFSP) is a plan for children ages birth to three with developmental delays, or children who have been diagnosed with a physical or mental condition that will likely result in a developmental delay, who need early intervention services. An IFSP includes education, health, and social services supports for the child and family.

Intellectual Disability – An intellectual disability involves problems with general mental abilities that affect functioning in two areas: intellectual functioning (such as learning, problem solving, judgement) and/or adaptive functioning (activities of daily life such as communication and independent living).

LOC – Level of Care. The intensity of effort required to diagnose, treat, preserve or maintain an individual’s physical or emotional status.

MCO – Managed Care Organization. They are a health care system that pays for medical care and treatment that does not necessarily control the medical care or treatment provider. HMOs and PPOs are forms of MCOs, and they are sometimes wrongly used interchangeably.

Medicaid – State funded medical care, referred to in the state of Washington as Apple Health. Families and individuals are eligible for health benefits if they meet income guidelines and are not eligible for Medicare. Medicaid in Washington is free or low cost for those who are eligible and are managed by five separate HMOs – Amerigroup, Community Health Plan, Coordinated Care, Molina Healthcare, and United Healthcare.

Medicare – Federal health insurance program that provides health benefits to Americans age 65 and older and to individuals with qualifying disabilities. Medicare is not dependent on income.

Medicaid Waivers – These are health care programs administered by Medicaid, outside the traditional hospital settings. They are intended to provide local, non-institutional solutions for individuals with disabilities.

NEAR Science – Short for Neuroscience, Epigenetics, ACEs and Resilience. NEAR Science is a complementary set of study that opens the door to practical, on the ground, applications and responses to ACEs and Toxic Stress.

Neurological Impairment or Disorder – In this, the capacity of the nervous system is limited or impaired with difficulties exhibited in one or more of the following areas: the use of memory, the control and use of cognitive functioning, sensory and motor skills, speech, language, organizational skills, information processing, affect, social skills, or basic life functions. The term includes students who have received a traumatic brain injury.

P2P – Parent to Parent support centers for parents with children who have developmental disabilities. There are national, statewide, and county based P2Ps.

PPO – Stands for Preferred Provider Organization, a type of MCO, similar to HMO, but they allow individuals to go to whatever doctor they like, not just ones that are “in-network.” Because of this, they tend to be more expensive than HMOs.

Premium – Premiums in insurance are the amount that a MCO, PPO, or other kind of health insurance is paid every month to maintain medical insurance. This can be paid by the individual or an employer, if an individual has health insurance through work. If an individual is on Medicaid or Medicare, there may not be a premium.

Protective Factors – Conditions or attributes in individuals, families, communities, or the larger society that mitigate or eliminate risk in families and communities, thereby increasing the health and well-being of children and families. Protective factors help parents to find resources, supports, or coping strategies that allow them to parent effectively, even under stress

Provider – A provider is a health care professional or practice that provides medical care. This includes doctors, nurses, mental health professionals, dentists, and specialists.

Psychosis – True psychosis refers to changes in the brain that interfere with a person’s experience of his or her world. The experience of psychosis varies greatly from person to person. Psychotic disorders rarely emerge suddenly. Most often, the symptoms evolve and become gradually worse over a period of months or even years.

Remote Patient Monitoring – Remote patient monitoring (RPM) uses digital technologies to collect medical and other forms of health data from individuals in one location and electronically transmit that information securely to health care providers in a different location for assessment and recommendations. This type of service allows a provider to continue to track healthcare data for a patient once released to home or a care facility, reducing readmission rates.

SOC – Systems of Care is community-driven whole-person care. Systems of care is a service delivery approach that builds partnerships to create a broad, integrated process for meeting families’ multiple needs.

SUD – Substance Use Disorder. This is the clinical name for an addiction to a substance that impairs an individual’s life. It was formally refereed to as substance abuse or addition.

Telehealth – Telehealth is the use of digital information and communication technologies, such as computers and mobile devices, to access health care services remotely and manage your health care. These may be technologies you use from home or that your doctor uses to improve or support health care services.

Telemedicine – Telemedicine involves the use of electronic communications and software to provide clinical services to patients without an in-person visit. The crucial difference between it and telehealth is the use of specialized medical equipment that can relay medical information to the healthcare provider.

Title V – The Maternal and Child Health Block Grant Program, often referred to as Title Five, are grants to provide health care and public health services for an estimated 55 million people (including pregnant women, infants, children, and children with special needs), and their families in the United States. Many programs that aid infants and children with complex health care needs are a result of the Title V program.

Triage – The process of sorting people based on their need for immediate medical treatment as compared to their chance of benefiting from such care.

Vocational Rehabilitation – Provides counseling to help find work, along with employment services and supports to people with disabilities who want to work, but may have faced substantial barriers in finding meaningful and sustained employment.

WISe – Wraparound with Intensive Services. A Washington State intensive outpatient services program for youth, created after

Diagnosis: Genetic Conditions

Including Cystic Fibrosis, Down Syndrome, and Fragile X

General Information on Genetics


Every human has 23 pairs of chromosomes. Chromosomes are little units that each contain a long piece of genetic instructions called DNA, which consists of many different genes.


The gene, which is a long string of DNA makes up a chromosome. From the 23 pairs of chromosomes that make up who you are, half of each pair comes from your mother and the other half comes from your father.
The genes you inherit from both your parents determine what kind of character traits you will have, how you will look, and what diseases you may have.


A DNA strand is made up of 4 bases which are T (thymine), A (adenine), C (cytosine), G (guanine). The specific order of these bases works like instructions, and decides what kind of protein this gene will make.
DNA writes instructions to make specific proteins. Proteins are made up of amino acids and are inside every cell. Proteins are vital for all living things. Different proteins have different functions in our body.

Genetic Disorders

When there is a change in a DNA sequence, it is called a mutation. If a DNA mutation occurs in the egg or sperm, it can be inherited by the child. Other mutations do not pass on from parents to children.

Genetic testing can provide information about changes in chromosomes, genes, or proteins that might impact a person’s health, development, or ability to respond to certain medical treatments. Testing is available from pre-birth throughout the lifespan.

A genetic test can confirm or rule out a suspected genetic condition or determine whether someone might develop a medical condition or pass on a genetic disorder to a child. More than 1,000 genetic tests are currently in use, and more are being developed.

Testing is voluntary and personal. Families can discuss with providers whether information found through testing might help with choice-making or whether the testing might cause stress. A geneticist or genetic counselor can provide guidance about the pros and cons of the test and discuss the social and emotional aspects of testing.

Preimplantation testing

Preimplantation testing is a when you screen a fertilized embryo before implantation. In-vitro fertilization is when a mother’s egg, and a father’s sperm are fertilized outside of the body, then implanted into the woman’s womb. When a mother chooses to go through in-vitro fertilization, the embryo gets tested for chromosomal or genetic disorders. Only the embryo without any genetic mutations or disorders gets implanted for pregnancy.

Prenatal testing

Prenatal testing is offered during pregnancy when there is an increased risk of the baby being born with a genetic disorder. Prenatal testing carries a small risk of losing the pregnancy through miscarriage due to the invasive nature of this test requiring amniotic fluid or tissue from the fetus area. Although prenatal testing won’t identify all possible genetic disorders, it can offer some answers and piece of mind.

Newborn screening

The most common type of genetic testing is newborn screening. Typically, 1 to 2 days after a baby is born, a blood sample will be taken by pricking a baby’s heel, and be used to identify and genetic disorders that can be treated early in life. The parents only receive results if they are positive, followed by additional tests to detect any genetic disorders.

Diagnostic testing

When a person is sent in to get diagnostic testing, there is usually a specific genetic condition.
If a patient is trying to find out what is making them ill, a medical provider may diagnose a specific condition, then have it confirmed with diagnostic testing.

Predictive and presymptomatic testing

Predictive and presymptomatic testing usually occurs when a family member may have been diagnosed with a genetic disorder. Predictive testing helps identify what mutations one may have that may increase their risk of developing specific disorders such as cancer, or heart disease. By finding a gene that increases someone’s chances of developing a disease, it can help patients make medical decisions about their health or lifestyle.

Carrier testing

When people have a family history of genetic disorders or belong to an ethnic group that has an increased risk of a disorder, they may go through carrier testing. When two people carry a change in a gene they can pass it to their children. If both parents get tested, they can be informed about their risk of having children with that genetic condition.

Pharmacogenomic testing

Medical providers may sometimes have to prescribe pharmacogenomic testing to identify which medication is right for an individual.

Research genetic testing

Research genetic testing is done for research purposes. It helps researchers expand the knowledge of genetics and the human body.

How Genetic Testing Works

Once a person comes to the decision with their medical provider, or genetic counselor that a specific genetic test is right for them, their medial provider will issue the test. A small blood sample, or other tissue such as the inside of your cheek with your DNA will be sent to a lab. The lab technicians will run the specific tests, then send the results to the patient’s doctor or genetic counselor. The medical provider will then interpret the results to the patient. If the patient requests, the lab results can be sent directly to them.

Challenges and Barriers

Aside from prenatal testing having small risks, there aren’t direct physical risks to getting genetic testing done. The drawbacks of genetic testing mainly consist of financial and emotional burdens.

Genetic testing can cost anywhere from $100 to $2,000 depending on the type of test. A more complex diagnoses will render more tests to be run, resulting in a higher bill. Getting results of the test may take from a few weeks to several months. Some test results may be available faster due to time sensitivity pertaining to that test, such as prenatal tests. Consulting with a genetic counselor or medical provider can give the individual information about turnaround time of a test.

When a genetic test is recommended by a medical provider, it may be covered by health insurance. Newborn screening can be fully or partially covered by many states as well. Coverage will depend on the type of test they are looking to get. Some people choose not to use their health insurance for genetic testing because the results can affect the person’s healthcare coverage. If you would like to know more about the Genetic Information Nondiscrimination Act (GINA) that protects individuals from genetic discrimination, visit NHGRI

Emotional drawbacks of genetic testing can be as burdensome or more so than financial drawbacks. Finding out the results of the genetic tests, can cause anxiety, anger, guilt, or depression. One may hope for a positive outcome and end up with more information than they can handle. It is important to discuss the potential outcomes with your genetic counselor before going forward with the test.


Although there are limitations to genetic testing, getting a positive result doesn’t necessarily mean one will develop a disease. The Benefits of genetic testing is that it can help eliminate uncertainty and give you answers.
There are limitations to the treatment options for specific diagnosis and weighing the risks and benefits is important before making a decision to go through with genetic testing. After carefully discussing the risks and benefits of genetic testing, and choosing to go through with it, some people can find it helpful to have answers and the possibility for recommendations for treatments, and changes to lifestyle and habits. The opportunity to prepare for something gives some people peace of mind.

Genetic Condition Websites

American College of Medical Genetics and Genomes: Find a Genetic Clinic

Western States Regional Genetics Network

Cystic Fibrosis (CF)

As the Mayo Clinic states:

Cystic fibrosis (CF) is an inherited disorder that causes severe damage to the lungs, digestive system and other organs in the body.

Cystic fibrosis affects the cells that produce mucus, sweat and digestive juices. These secreted fluids are normally thin and slippery. But in people with CF, a defective gene causes the secretions to become sticky and thick. Instead of acting as lubricants, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas.

Downloadable Resources

Adult Guide to Cystic Fibrosis
An Introduction to Cystic Fibrosis For Patients and Their Families (Spanish Version Available here)
Clinical Care Schedule for Newborns to 5-Year-Olds with CF
Cystic Fibrosis Guide for Parents
Cystic Fibrosis Parent Handbook


Newborn Screening for CF
Types of CFTR Mutations
What it’s Like to Live with Cystic Fibrosis


American Lung Association
Cystic Fibrosis Foundation
Cystic Fibrosis News Today
Cystic Fibrosis Trust
Genetics Home Reference: Cystic fibrosis
NORD: Cystic Fibrosis

Down Syndrome

As defined by the CDC:

Down syndrome is a condition in which a person has an extra chromosome. Chromosomes are small “packages” of genes in the body. They determine how a baby’s body forms during pregnancy and how the baby’s body functions as it grows in the womb and after birth. Typically, a baby is born with 46 chromosomes. Babies with Down syndrome have an extra copy of one of these chromosomes, chromosome 21. A medical term for having an extra copy of a chromosome is ‘trisomy.’ Down syndrome is also referred to as Trisomy 21. This extra copy changes how the baby’s body and brain develop, which can cause both mental and physical challenges for the baby.

Downloadable Resources

A Promising Future Together: A Guide for New and Expectant Parents (Spanish Version Here)
About Down Syndrome (Spanish Version Here)
Aging and Down Syndrome (Spanish Version Here)
Genetics Home Reference: Down Syndrome


A Mother Shares her Personal Journey of Welcoming a Baby with Down Syndrome
Mark’s Story—Written by his sister, Sonja
Megan’s Story


CDC: Facts about Down Syndrome
Global Down Syndrome Foundation
National Down Syndrome Congress
National Down Syndrome Society

Washington State Resources

Clallam Mosaic
Down Syndrome Association of Snohomish County
Down Syndrome Community of Puget Sound
The Arc of King County
The Arc of Washington State
Washington State DoH: Resources for Down Syndrome
Washington State Fathers Network

Fragile X

Harvard Medical School states:

Fragile X syndrome is an inherited disorder associated with mental retardation and a particular appearance. It is caused by an error in a small piece of the DNA (genetic blueprint) for the FMR1 gene. This gene is found on the X chromosome, one of the two chromosomes (X and Y) that determine gender.

In people with fragile X, a particular section of the DNA code — CGG — is “fragile” and gets repeated an unusually large number of times, compared with the normal 5 to 50 times. As a result, the FMR1 gene is not expressed (turned on), and the body cannot produce FMR1 protein, which is related to nerve function.

Downloadable Resources

Behavioral Challenges in Fragile X Syndrome
Early Childhood Developmental and Educational Guidelines for Children with Fragile X Syndrome
Facts About Fragile X Syndrome
Fragile X-associated Disorders: A Handbook for Families, Health Care Providers, Counselors, and Educators
Genetic Counseling & Family Support
Myth Busters For Patients and Families: Fragile X Syndrome


Are There Treatments for Fragile X Syndrome?
Carrier Testing for Fragile X Syndrome
Fragile X and Autism


CDC: Fragile X Syndrome (FXS)
FRAXA Research Foundation
Genetics Home Reference: Fragile X Syndrome
National Fragile X Foundation

Diagnosis: Birth Defect

Including Cerebral Palsy, Cleft Lip and Cleft Palate, Congenital Heart Defects, Fetal Alcohol Spectrum Disorders, Hearing Loss and Deafness, Muscular Dystrophy, Spina Bifida, and Vision Loss

According to the CDC:

Every 4 ½ minutes, a baby is born with a birth defect in the United States. That means nearly 120,000 babies are affected by birth defects each year.

Birth defects are structural changes present at birth that can affect almost any part or parts of the body (e.g., heart, brain, foot). They may affect how the body looks, works, or both. Birth defects can vary from mild to severe. The well-being of each child affected with a birth defect depends mostly on which organ or body part is involved and how much it is affected. Depending on the severity of the defect and what body part is affected, the expected lifespan of a person with a birth defect may or may not be affected.


Centers for Disease Control: Birth Defects
Diagnosis of Birth Defects

Cerebral Palsy

According to the National Institute of Neurological Disorders and Stroke:

The term cerebral palsy refers to a group of neurological disorders that appear in infancy or early childhood and permanently affect body movement, muscle coordination, and balance. CP affects the part of the brain that controls muscle movements. The majority of children with cerebral palsy are born with it, although it may not be detected until months or years later. The early signs of cerebral palsy usually appear before a child reaches 3 years of age. The most common are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a “scissored” gait; and muscle tone that is either too stiff or too floppy. Other neurological symptoms that commonly occur in individuals with CP include seizures, hearing loss and impaired vision, bladder and bowel control issues, and pain and abnormal sensations. A small number of children have CP as the result of brain damage in the first few months or years of life, brain infections such as bacterial meningitis or viral encephalitis, or head injury from a motor vehicle accident, a fall, or child abuse. The disorder isn’t progressive, meaning that the brain damage typically doesn’t get worse over time. Risk factors associated with CP do not cause the disorder but can increase a child’s chance of being born with the disorder.  CP is not hereditary.

Downloadable Resources

Cerebral Palsy: An Information Guide for Parents
Cerebral Palsy: Critical Elements of Care
Cerebral Palsy: Hope Through Research
Cerebral Palsy in Childhood
Introduction to Cerebral Palsy


Grooming and Self Care Tips for the Cerebral Palsy Community
Inspiring Pease brothers ready to take on Ironman World Championship
Living with Cerebral Palsy: The Gandee Family Story
Technology and the IEP


American Academy for Cerebral Palsy and Developmental Medicine (AACPDM)
CDC: Cerebral Palsy
Cerebral Palsy Foundation
Cerebral Palsy Guidance
Cerebral Palsy Research Registry (CPRR)
United Cerebral Palsy (UCP)

Cleft Lip and Cleft Palate

The Mayo Clinic states:

Cleft lip and cleft palate are openings or splits in the upper lip, the roof of the mouth (palate) or both. Cleft lip and cleft palate result when facial structures that are developing in an unborn baby don’t close completely.

Cleft lip and cleft palate are among the most common birth defects. They most commonly occur as isolated birth defects but are also associated with many inherited genetic conditions or syndromes.

Downloadable Resources

Children Born with Cleft Lip & Palate: A Guide for Parents and Carers
Children Born with Cleft Lip and Palate: Alveolar Bone Grafting (ABG)
Children Born with Cleft Lip & Palate: The School Years
Cleft Lip and Palate: Critical Elements of Care
The Impact of Cleft Palate: Speech
The Management of Cleft Lip & Palate


Real Stories: Living with Cleft Lip and Palate


CDC: Facts about Cleft Lip and Cleft Palate
Cleft Lip & Palate Association (CLAPA)

Congenital Heart Defects

According to the NIH:

Congenital heart defects, or diseases, are problems with the heart’s structure that are present at birth. They may change the normal flow of blood through the heart. Congenital heart defects are the most common type of birth defect.

There are many types of congenital heart defects. The most common defects involve the inside walls of the heart, the valves of the heart, or the large blood vessels that carry blood to and from the heart. Some defects require no treatment, but some require treatment soon after birth. Because diagnosis and treatment of congenital heart defects has improved, more babies are surviving and now many adults are living with congenital heart defects.

Downloadable Resources

Five Things you Need to Know About Congenital Heart Defects
Mended Little Heart Guide
Screening for Critical Congenital Heart Defects
Therapeutic Cardiac Catheterizations for Children with Congenital Heart Disease
When Your Child Has a Heart Defect: Planning Ahead for Lifelong Heart Health (Spanish Version here)


Children with Heart Conditions Have Special Healthcare Needs
Congenital Heart Defects Surgery
Feeding Tips For Your Baby with CHD
Real Stories: Living with Heart Defects
Special Needs For Children with a Congenital Heart Defect


Adult Congenital Heart Association
American Heart Association
Congenital Heart Defects in Children
National Heart, Lung, and Blood Institute
March of Dimes: Congenital Heart Defects and Critical CHDs
Transplant Families

Fetal Alcohol Spectrum Disorders

According to the Centers of Disease Control:

Fetal alcohol spectrum disorders (FASDs) are a group of conditions that can occur in a person whose mother drank alcohol during pregnancy. These effects can include physical problems and problems with behavior and learning. Often, a person with an FASD has a mix of these problems.

Downloadable Resources

Fetal Alcohol Exposure
Fetal Alcohol Spectrum Disorders (Spanish Version available here)
Flow Diagram for Medical Home Evaluation of Fetal Alcohol Spectrum Disorders
Parenting Children Affected by Fetal Alcohol Syndrome
So You Have Been Diagnosed with FASD: Now What?
Strategies Parents Find Helpful In Raising Their Children Living With FASD
The Basics of Fetal Alcohol Spectrum Disorders: Information for Families


Fetal Alcohol Syndrome Is Quite Common — And Most Children Aren’t Diagnosed
Living with FASD: Brenna
My Mother, the Alcoholic: Living with Foetal Alcohol Syndrome


CDC: Fetal Alcohol Spectrum Disorders (FASDs)
Fetal Alcohol Spectrum Disorders
Fetal Alcohol Spectrum Disorders (FASD) Toolkit
National Organization on Fetal Alcohol Syndrome (NOFAS)

Hearing Loss and Deafness

According to the World Health Organization:

A person who is not able to hear as well as someone with normal hearing – hearing thresholds of 25 dB or better in both ears – is said to have hearing loss. Hearing loss may be mild, moderate, severe, or profound. It can affect one ear or both ears, and leads to difficulty in hearing conversational speech or loud sounds.

‘Hard of hearing’ refers to people with hearing loss ranging from mild to severe. People who are hard of hearing usually communicate through spoken language and can benefit from hearing aids, cochlear implants, and other assistive devices as well as captioning. People with more significant hearing losses may benefit from cochlear implants.

‘Deaf’ people mostly have profound hearing loss, which implies very little or no hearing. They often use sign language for communication.

Downloadable Resources

Assistive Devices for People with Hearing, Voice, Speech, or Language Disorders
Decision Guide to Communication Choices For Parents (Spanish Version available here)
Guía para Familias de Niños con Pérdida Auditiva
Learning about Hearing Loss – A Roadmap for Families (Spanish) (Russian) (Chinese)
Making a Plan for Your Child: IFSP Considerations for Children who are Deaf and Hard of Hearing
Questions You May Want to Ask Your Child’s Audiologist
Questions You May Want to Ask Your Child’s Speech Language Pathologist
Resource Notebook for Families of Children Who are Deaf or Hard of Hearing
(Spanish) (Chinese) (Russian) (Vietnamese) (Somali)
The Deaf Community: An Introduction (Spanish)


IDEA: The Foundation of Special Education
One Family’s Journey: Amelia’s Story
Section 504: A Plan for Equity, Access and Accommodations
What is Deaf Culture?


American Society for Deaf Children
ASL Sign Language Dictionary
CDC: Hearing Loss in Children
National Association of the Deaf (NAD)
National Center for Hearing Assessment and Management (NCHAM)
Sign It: ASL Made Easy
World Federation of the Deaf (WFD)

Washington State Resources

Abused Deaf Women’s Advocacy Services (ADWAS)
Hearing, Speech & Deaf Center
Northwest Rainbow Alliance of the Deaf (NWRAD)
Puget Sound Association of the Deaf
Washington Hands & Voices
Washington School for the Deaf
Washington State Association of the Deaf
Washington State Office of the Deaf and Hard of Hearing

Muscular Dystrophy

According to the CDC:

Muscular dystrophies are a group of genetic disorders that result in muscle weakness over time. Each type of muscular dystrophy is different from the others. It is important to get help as early as possible. Muscular dystrophy has no cure, but acting early may help an individual with muscular dystrophy get the services and treatments he or she needs to lead a full life.

Downloadable Resources

Guide For Caregivers
Hope Through Research: Muscular Dystrophy
Learning to Live with Neuromuscular Disease: A Message for Parents
The Diagnosis and Management of Duchenne Muscular Dystrophy Guide for Families


Cure CMD
Muscular Dystrophy Association (MDA)
Muscular Dystrophy Information Page
Parent Project Muscular Dystrophy

Spina Bifida

From the Mayo Clinic:

Spina bifida is a birth defect that occurs when the spine and spinal cord don’t form properly. It’s a type of neural tube defect. The neural tube is the structure in a developing embryo that eventually becomes the baby’s brain, spinal cord and the tissues that enclose them.

Normally, the neural tube forms early in pregnancy and it closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube doesn’t close or develop properly, causing defects in the spinal cord and in the bones of the spine.

Spina bifida can range from mild to severe, depending on the type of defect, size, location and complications. When necessary, early treatment for spina bifida involves surgery — although such treatment doesn’t always completely resolve the problem.

Downloadable Resources

An Expectant Parent’s Guide to Spina Bifida
Guidelines for the Care of People with Spina Bifida
Hydrocephalus and Shunts
Spina Bifida and the Spine
Spina Bifida Occulta
Urinary Tract Infections in Young Children with Spina Bifida
What is Spina Bifida?


Living with Spina Bifida – Nikia’s Story
Things I Wish I Knew on Folic Acid


CDC: Spina Bifida
NIH Spina Bifida Information Page
Spina Bifida Association

Vision Loss

The World Health Organization:

Classifies vision impairment into two groups, distance and near presenting vision impairment. A person’s experience of vision impairment varies depending upon many different factors. This includes for example, the availability of prevention and treatment interventions, access to vision rehabilitation (including assistive products such as glasses or white canes), and whether the person experiences problems with inaccessible buildings, transport and information.

Among children, the causes of vision impairment vary considerably across countries. For example, in low-income countries congenital cataract is a leading cause, whereas in high income countries it is more likely to be retinopathy of prematurity.

Downloadable Resources

Facts About Vision Loss
Going to College: Tips for Students with Visual Impairments
Living With Low Vision: What You Should Know
Visual Impairments, Including Blindness


Growing Up with Low Vision: An Interview with Dr. Z


American Council of the Blind
American Foundation for the Blind (AFB)
International Agency for the Prevention of Blindness (IAPB)
National Federation of the Blind (NFB)
Teaching Students with Visual Impairments
World Blind Union (WBU)

Washington State Resources

Edith Bishel Center for the Blind and Visually Impaired
Lighthouse for the Blind
Washington Council of the Blind (WCB)
Washington State Department of Services for the Blind
Washington State School for the Blind