Tag: Health

Graduating from NICU: The Joy and Anxiety Finding Your Way to Baby’s Norm

Posted on by Nicol Walsh

Coming home from the hospital with your baby can be both a joyous and potentially uncertain event, especially for families whose child is graduating from the Neonatal Intensive Care Unit or NICU. As parents, you have had a much different journey home than is typical for most families. Often, a baby is in the NICU because they are born early and need support with getting their bodies up and running because they “joined the world” a little or a lot early. Sometimes a baby is in the NICU because they were born needing medical support before they can go home. It can be because of genetic conditions, trauma during birth, other conditions needing medical support, interventions, and time in the hospital. This article will discuss “graduation” to home, how to shift expectations for caring for your baby, and where to go when it’s overwhelming.

Highlights:

  • Building a transition plan before you leave that includes what’s next at home
  • Talking with your transition team on building a Medical Home for your baby
  • How do I get feeding support if I need it?
  • Where do I go if I just need someone to talk to?
  • What is Birth to Three and is it helpful?

Heading Home

Before your baby leaves the NICU, the doctors and nurses will teach you how to take care of your baby at home. You’ll learn about feeding, sleeping, using medical equipment, and what is expected and when you should bring your baby in to be seen. There is a lot happening while your baby is in the NICU, but if you can get connected with a Developmental Pediatrician or a Pediatrician’s clinic before you leave, you have already set you and your baby up for support outside of the hospital when you have questions. That Pediatrician and their team can also be a hub for connecting you and your baby to the specialists that are needed outside of the hospital.  In the transition meetings before your baby comes home, the first appointments for specialists and follow-ups will be set up by the transition team but the Pediatrician can help keep it going if you pull them into the conversation right away. Ask the transition team to help set up an appointment with the Pediatrician when you and baby get home to help get it started.

Specialists and Therapies

Depending on the health impacts that your child has been diagnosed with, you may be juggling several different kinds of appointments for the first year after bringing your child home from NICU. Some of the specialists could be Pulmonology for breathing, because many premature babies need extra time for their lungs to catch up, Cardiology for any heart issues, and a Neurologist for any developmental delays, and to help families keep track of where their child is if there is no diagnosis of a developmental disability or a genetic disorder.

Often, there are feeding challenges, and a baby may need a feeding tube. There are specialists who can help with tracking everything that needs to happen for the care of feeding tubes, and with where and how to get formulas. The UW/Seattle Children’s Feeding Program has nutritionists to support families and resources that families and pediatricians can access.

Occupational and Physical Therapists also support a child’s developmental needs and can be part of the team that adds components to strengthen mind and body development over the year post-NICU. Depending on where you live and what NICU your baby was in, those pediatric specialists could be at Mary Bridge, Seattle Children’s, Children’s Village in Yakima, Sacred Heart in Spokane, or Madigan if you are a Military family. If your baby has a rare condition or disorder, you may need to travel to Seattle Children’s or Mary Bridge, no matter where you live in the state, because of the limited availability of specialists for some diagnoses. Establishing a Medical Home by setting up connections for your baby with a Pediatric clinic can help with referrals, keeping track of who the specialists are, and having someone to call if you have a question, rather than going to the emergency room for every medical concern.

Another help for families that can also lessen the volume of therapy appointments that may come with NICU graduation is having your baby in the Birth to Three services. Some NICUs can and do enroll a family before they leave as part of transition supports, but not all families are ready, and just getting home is the priority. If you get home and decide you are ready to enroll your baby, you can get started by visiting Early Support for Infants and Toddlers (ESIT) online or by calling 360-725-3500. Your baby, having been in the NICU, meets the qualifications for early intervention services. Many of the Occupational, physical, and feeding/nutrition therapies you would need to coordinate on your own are part of the ESIT program, and they come to your door. For many families, this takes a huge burden of some of the care coordination off their plates and gives them some respite. Parents also get skill-building to increase their confidence and knowledge in caring for their child’s unique needs from experts who take more than 15 minutes during a doctor’s visit.

Community Supports

Juggling all of this can be very overwhelming, even if this isn’t your first baby. This is all new, the expectations are different, it’s more complicated and time-consuming. There are some peer supports to call, text, or email if you need someone to help with navigating this new parent landscape. Two Statewide supports you can connect with, no matter where you live, are PAVE and a Family-to-Family support navigator. They are the parents of a child with special healthcare needs who have experience with navigating complex needs. They have supported many families in learning and understanding the next steps. Another is the Statewide Parent to Parent program. There is a Parent-to-Parent program in almost every county in our state, specializing in supporting families new to a diagnosis. While their main focus is developmental disability, Parent to Parent coordinators can and do connect families to resources, regardless of the need. If your child has impacted hearing, a family support organization in Washington State is Hands and Voices. They provide peer support, training, and a family toolkit for families once they receive a diagnosis. They also work with ESIT and later with the schools if a family requests.

Keeping Records

One final difference that becomes an enormous help down the line is starting a Care or Medical Notebook. It is like a traditional baby book in some ways, but it pulls together all the important medical and care documents and instructions related to your baby’s care. There are several templates available, including some online. If you go to a clinic that shares the same electronic chart system as the hospital and specialist that your baby sees, it is easy for them to access notes, medication recommendations, and surgery charts. If they are in different systems, then the burden of bridging that information goes to you. Even though a release of information is signed, it doesn’t necessarily mean that notes or information are faxed or emailed. It helps to request the notes from a visit and put them in your baby’s care notebook, so you have accurate information to share if things get delayed or lost in the system. There will be a couple of templates shared in the helpful resources below, as well as a couple of NICU information packets that have good general information. A simple information-sharing “roadmap” will be attached to the article and can also be taken to each Doctor so that information can be shared and you can stay on track. Here are a couple of Care Notebook articles to give you some ideas:

Helpful Resources

Understanding the impact of Whooping Cough, the Flu, and COVID in Washington

Posted on by Nicol Walsh

Since the COVID shutdown ended, flu season has become increasingly hard on young children. Influenza A and B, as well as RSV (Respiratory Syncytial Virus), all affect the lungs, and young children often have a difficult time fighting off the fever and congestion that come along with these viruses. This is especially true for a child or youth of any age who has a complex medical issue. Now there is an additional health concern to watch out for: Whooping Cough.

Brief Overview

  • Gain an understanding of the increased risk for Flu, COVID, and Whooping Cough.
  • What are the potential long-term health concerns?
  • What is Whooping Cough?
  • What ages are at the highest risk?
  • Best practices for care.

What is Whooping Cough?

Whooping Cough (the scientific name is “pertussis”), a childhood illness that was rarely seen (15 cases in 2021), continues to rise in Washington State, with over 2,049 cases having been reported by December 2025, surpassing what the Washington Department of Health considers to be the “epidemic” level. Whooping Cough is a bacterial infection that spreads very quickly, just like COVID did. It can start out with mild symptoms that look like a cold, so it seems like just another childhood cold. The difference comes in the second week, when the cough worsens and long, severe fits develop. Whooping Cough can last several weeks, sometimes months. Those most at risk for severe health impacts are infants, newborns, and those with asthma, other lung diseases, or heart conditions. 

What Ages Are at Highest Risk? 

While all ages can get sick with Whooping Cough, infants and babies who get the disease are at serious risk of hospitalization.  Around a third of babies, aged one and younger, who get Whooping Cough have to be hospitalized.  Most of the hospitalizations are due to Apnea or Pneumonia, but in rare cases, convulsions and a disease of the brain called encephalopathy occur.  1% of babies who need hospitalization due to Whooping Cough will die.  Older children and adults are still at risk, but their chance of getting hospitalized or dying is significantly less.

Best Practices for Care

There are various ways to find out whether your child’s illness is the flu, COVID, a cold, or Whooping Cough. Combined flu and COVID at-home tests are available at many pharmacies if you don’t have a regular pediatrician. A Whooping Cough test needs to be done at an Urgent Care or doctor’s office, and it is important to let them know what your child is being tested for, so they can be in a separate room from other patients.

If your child has a pre-existing condition that can cause complications due to illness, you can talk with the doctor about what might be best to combat COVID or the flu. There are some medications if things are caught early enough. The same is also true for the antibiotics used to treat Whooping Cough. If a child or an adult is diagnosed early enough, antibiotics can be very effective. Later in the progression of the illness, antibiotics don’t work as well against bacteria, but they do help reduce the spread of the disease.

Immunization rates since the COVID-19 shutdown have never recovered, and there is a lot of conflicting information about vaccines. However, the CDC states that immunization is the most effective childhood disease-prevention method with the lowest long-term health impact for both the child and the community. If you choose an alternative to vaccination, masking, and isolating when symptoms appear, using many of the methods used during COVID can be considered a way to protect the community as you care for your child.

Additional Information

Below are links to information on Whooping Cough, Pediatric RSV, and Influenza care.

Developmental Screening (Birth to Three and Medically needed developmental screening)

Posted on by Nicol Walsh
Download understanding milestones and delays

What is Developmental Screening?

Developmental screening is the practice of systematically looking for and monitoring signs that a young child may be delayed in one or more areas of development. Screening is not meant to establish a diagnosis for the child, but rather to help professionals and families determine whether more in-depth assessment is the next step. By using a high-quality screening tool, professionals can screen children for delays accurately and cost-effectively.

Think about your child’s first months. The medical professionals set up regular “Well-child” appointments just to monitor how your child is doing.  These “Well-child” visits allow doctors and nurses to have regular contact with children to keep track of the child’s health and development through periodic developmental screening. Developmental screening is a simple process that can have both informal and formal assessments. When using a tool that is more formal in nature, the short test can tell if a child is learning basic skills when he or she should, or if there are delays. Developmental screening can be done by other professionals in health care, community, or school settings.

We have heard many times over the years that a child’s greatest window for development is in the first five years of life. Eighty-five percent of the brain’s development occurs before age three, making the first years of life critical to a child’s future success. The research shows that early intervention greatly improves a child’s developmental and social skills. Early intervention services help children from birth through 3 years of ages. Services usually include the support of an early educator who works with the family, as well as therapy (if identified as a need) to help the child talk, walk, and interact with others.

It’s not uncommon for parents to become concerned when their little one doesn’t seem to be developing within the normal schedule of “baby” milestones. You may worry that he hasn’t rolled over yet, or that he isn’t doing what the neighbor’s child, who is about the same age is doing. There may be concerns about your baby sitting up or beginning to verbalize words and sounds.

While it’s true that children develop differently, at their own pace, and that the range of what’s “normal” development is quite broad, it’s hard not to worry and wonder. If you think that your child is not developing at the same pace or in the same way as most children his or her age, it is often a good idea to talk to your child’s pediatrician. Explain your concerns. Tell the doctor what you have observed with your child. The doctor or other professionals might ask you some questions they may also talk and play with your child to see how he or she plays, learns, speaks, behaves, and moves. A delay in any of these areas could be a sign of a problem.

You can also get in touch with your community’s lead agency for birth-to-three services, and ask for an evaluation to see if there are possible delays. Based on referrals from the Doctor and the evaluation provided by the early intervention team, your child may be eligible for early intervention services, which will be developed with you and will address your child’s special needs.

Screening is a simple process that can identify infants and young children who may be at risk for health, developmental, or social/emotional problems. It identifies children who may need a health assessment, diagnostic assessment, or educational evaluation. “Screening” means using a standardized instrument. This could include a parent questionnaire, observational process, or other form of measurement that has been validated by research to learn more about the child’s development. Using a standardized instrument is much more effective for identifying real concerns or delays than just using professional judgment or informal questions about the child’s development.

The screening process provides an opportunity for young children and their families to access a wide variety of services and early childhood programs. It also supports the parents’ understanding of their child’s health, development, and learning.

The developmental screening and evaluations can lead to the involvement of a Family Resource Coordinator who will walk with the family through those first three years. They do a family needs assessment, if the family wishes to have one done. This helps identify areas the needs and priorities of the child’s family. Family-directed services are meant to help family members understand the special needs of their child and how to enhance the child’s development.

The need to provide early intervention is significant. Many children with developmental delays are not being identified as early as possible. This can result in these children waiting to get the help they need to do well in social and educational settings until they are in a school or pre-school setting. Research has shown that in nearly one in six Washington kids has a developmental delay, but only 30% of these children are identified before starting kindergarten, when early support services are most effective. Additionally, research has also identified that in the United States, about 13% of children 3 to 17 years of age have developmental or behavioral disabilities. These can include autism, intellectual disabilities, and attention-deficit/hyperactivity disorder. Additionally, there are children who have delays in language, social skills, or other areas that affect school readiness. This same research found that many children with developmental disabilities weren’t identified before age 10. These types of delays have significant implications since by that age there are significant delays that might have been addressed earlier and provided opportunities for services and support that was missed.

Because of the rapid growth in a child’s first three years of life, early support and monitoring of child development is essential for these children to reach their full academic potential as well as social and personal success. In all cases, kids will experience greater success academically, socially, and personally if delays are caught early and kids and families get the support they need. Free developmental screening using the Ages and Stages Questionnaire-3 screening tool is one of the best ways to get more awareness of what can help your child. In addition to the Ages and Stages survey a terrific tool and support network has been established called “Within Reach”. The “WithinReach” website is committed to supporting optimal child development of all Washington families. Through the “WithinReach” Family Health Hotline and Plan a Save Care (POSC), families can access free developmental screening, connections to early learning and family support and referrals to early intervention for developmental delays.

If you would like a free developmental screening for your child or have concerns about your child’s development, it is as easy as calling their Family Health Hotline (800) 322-2588 or visiting their website at www.ParentHelp123.org.

Remember that as important as Developmental screening is as a part of early intervention, can go also be important in assuring that the needs of children of older ages also find success and resources. Developmental screening for older youth can include areas of the individual’s development in mental health, social and emotional needs, and communication needs, just to name a few. Developmental screening will help assure that the needs of the individual whether an infant or an older child, can be met, and how those needs can be met. As parents and family members we have a responsibility to help our children thrive and developmental screening can help us know which path to follow to make that happen.

Resources for this article:

Overview of Early Education from Center for Parent Information & Resources

Within Reach – Want to learn more about your child’s development?

Ages and Stages Questionnaires – Helping parents understand the Benefits for Developmental Screening

CDC- Developmental Monitoring and Screening

CDC – Autism Spectrum Disorder (ASD)

CDC – Facts about intellectual Disability

Ages and Stages

 

What is a Medical Home?

Posted on by Nicol Walsh

Brief Overview 

  • A “medical home” is a coordinated care team with a coordinated care plan for an individual’s medical needs.   
  • Medical homes can be very useful any time an individual has more than one provider and more than one provider prescribing medications or treatments. They are not only for highly complex medical conditions. 
  • Medical homes have many advantages, but it’s important to select providers with the interest and qualities to make it work 
  • This article offers tips and questions to ask yourself and your family’s providers to help decide if your child or other family member needs a medical home. 

Medical Home: What is it? Does my child need one?  

A medical home creates a coordinated team and a coordinated care plan around all your child’s medical needs. When a family or youth works with a physician or clinic to build (create) a medical home they all work together to “wrap around” the different medical providers and services needed for that person’s best health and wellbeing.   

Medical homes don’t happen right away and don’t always look the same. Often a medical home is started and/or managed through a primary care or pediatric clinic, but if a person has complex medical needs, a specialist provider, practice, or clinic may be a useful “site” for the medical home. 

Medical complexity, or a diagnosis that affects multiple systems in the body or has the potential to be life-threatening, adds its own set of challenges to a medical home. A medical home for an individual who is considered medically complex often has multiple specialists as well as therapists, medication management, and other systems such as school or early intervention. A good medical home can be a communication hub that helps this large multi-disciplinary team stay on the same page and not work at cross purposes.  

No matter who provides coordination, a medical home supports your child and helps you as the parent or guardian with care coordination. Some families have medical homes “built” through a specialist’s office, some a primary care pediatrician, and others who are on Medicaid can have that coordination through a managed care patient care specialist.  

There doesn’t need to be medical complexity to start discussing a medical home with a child’s team; there just needs to be more than one provider working with the child/youth or young adult, and with different medications prescribed by different providers. A medical home helps everyone be on the same page and you as a family to be part of the overall care plan.  

When working with a provider to develop a medical home, remember that respect is a two-way street. Working with complex needs can be frustrating and scary and just because someone is a physician doesn’t mean they have all the answers.  

Ask questions and let your providers know when you don’t understand a decision or if you disagree with their decision. This can be done respectfully and can help build a strong line of communication.   

A medical home set up under this mutual respect with the family and patient at the center and as co-creators of care is at the heart of the medical home idea and an essential foundation for a medical home that works.   

When choosing a provider to help you create a medical home, here are questions to ask yourself:  

  1. Who is being valued and honored as the expert on the child or youth? Is it the family and the individual?  
  1. Is this team family and patient-centered?  
  1. Is there trust and respect that goes both ways?  
  1. Are Culture, race, language, and religion being honored?  
  1. Is an effort being made to understand not only the diagnosis but also its long-term impact on the patient and the family?   
  1. Are all an individual’s healthcare needs included in the care plan, including well-child and required immunizations?  
  1. Can you get help to find specialty care and community services when needed?  
  1. Do you feel supported in managing the care plan as a caregiver, family, or individual?  
  1. Is information provided to help understand choices and options in care, and is time set aside for discussion, with the family and/or patient being the person who decides?  

What other qualities are important when choosing a provider or practice to create a medical home? 

  • It’s helpful if your provider has at least some experience with the diagnosed condition. The relationship of the provider with a patient and their family can be just as important.  
  • Is the provider a good listener? Open communications are important so decisions are developed together, and the provider recognizes that the family and their youth/young adult are the experts in developing the young person’s care. 
  • If your child is a transitioning youth an important consideration may be a provider or clinic’s connection to adult care and their willingness to work with the youth rather than the adult caregiver in developing care plans. 
  • Does a provider work well with the other members of a child’s care team?  Are they willing to communicate and think proactively about sharing information? When a family with their child, youth, or young adult works with a provider in a medical home to make decisions together as a team, and information is shared with all members of the team, it provides a robust model for long-term working care plan development no matter who moves in and out of that family and individual’s medical home.  
  • A willingness to work with supports inside and outside the medical profession is also something to think about. A physician that is willing to work with a school and advocate for the child’s needs in a school environment goes a long way in setting up a strong IEP or 504 education plan.  

Additional advantages to consider taking time to work with a provider to develop a medical home:  

  • It can help in the early identification of additional healthcare needs or potential complications, creating a proactive approach  
  • Provides consistent, ongoing primary care   
  • Continuing coordination with a broad range of other specialty services  
  • Medical home team’s support can help in finding more medical services when needed  
  • More cost-effective care overall  
  • A child or youth’s doctors will get to know their needs and individual circumstances better  
  • The integrated partnership approach creates better healthcare outcomes  
  • Information is easier to share across the different providers, with therapists, schools, and the patient and families themselves  
  • Strong relationship building is emphasized in care  
  • Fewer visits to the emergency room and hospital when problems are found more quickly  

Family can be a constant in many children’s lives. They know the history of the child and they will be there in the future.  

Bringing a trusted medical provider into that circle to help with medical coordination and care can increase a family’s ability to look beyond the need to juggle the many issues of caring for a child with special healthcare needs.  

A medical home can spread the burden of coordination and decision-making between many hands and can keep everyone on the same page. This alone can be worth the extra work that you may face in the beginning.  

Resources  

Here are some useful online resources for creating and using a medical home: 

American Academy of Pediatrics  

Washington State Medical Home  

Related  

Tips to Organize Your Child’s Medical and School Documents 

  

Apple Health for Kids: Medicaid and Children’s Health Insurance Program (CHiP) in Washington State

Posted on by Nicol Walsh

Overview

  • In Washington State, Medicaid, which includes the Children’s Health Insurance Program (CHiP) is called Apple Health. Medicaid and CHIP are medical insurance programs run by the state and funded by the federal government and the state.
  • Children can get free or low-cost health insurance from birth to age 19.
  • A child’s eligibility is based on living in Washington State, and the family level of income. Immigration status does not apply to Apple Health for Kids, and family information will not be shared with immigration officials.
  • There are links in this article to information on Apple Health insurance coverage for parents and caretakers, pregnant individuals, young adults, and children in foster care or who have been in foster care.

Where to apply or find more information about Apple Health for Kids:

Full Article

In Washington State, Medicaid, which includes the Children’s Health Insurance Program (CHiP) is called Apple Health. Medicaid and CHIP are medical insurance programs run by the state and funded by the federal government and the state.

The state agency that runs Apple Health programs is the Health Care Authority. This is the official website to get information about Apple Health programs. For some programs, such as Home and Community-Based Services Waivers (HCBS waivers) the Health Care Authority partners with the Department of Social and Health Services (DSHS). Find out more about HCBS waivers and similar programs at Informing Families.

Apple Health for Kids is free or low-cost health insurance for children from birth to age 19.

It covers the costs of medical, dental, vision (eye) care, hearing care, and behavioral (mental) health.

Medicaid programs, including CHiP, make sure that children get Early and Periodic Screening, Diagnostic, and Treatment services.

These services mean children get regular physical exams, are screened (checked) for any problems with physical and mental health, developmental delays, dental health, hearing, vision, and other tests to find any problems and treat them.

Are complex medical needs covered under Apple Health for Kids?

Yes, the Medically Intensive Children’s Program (MICP) is a Medicaid program for children who need a registered nurse to provide support.  Visit the MICP page at WA State’s Health Care Authority.

Who can get Apple Health for Kids?

  • The child must live in Washington State.
  • The family income must be below a certain amount. Based on the family income level, a child may qualify for either the free Apple Health for Kids (Medicaid), or for Apple Health for Kids with premiums (CHiP).

Important! Children and pregnant individuals may qualify for WA Apple Health coverage regardless of their immigration status.

Information from WashingtonLawHelp.org says:

“All children up to age 19 who have low income are eligible for free medical coverage (“Washington Apple Health”) in Washington State. There are no immigration status requirements for this coverage. Children from families with moderate income can also get coverage. They may have to pay a small monthly premium.

Your children may also be eligible for other programs, including Head Start and other education programs, school meals, and child nutrition programs

It’s generally very safe to apply.  State and federal laws protect the privacy of the information you put on your application. Your information should not be shared with immigration officials.

If you prefer, you can choose to apply for benefits for other family members, such as your children, and not for yourself. You won’t have to give information about your own immigration status, but you may have to give proof of your family’s income.”

Costs of Apple Health for Kids:

People on Apple Health (adults and children) do not pay cost-sharing, co-payments, or deductibles for any service.

There are three premium price levels for Apple Health for Kids:

  • Free (no monthly premiums)
  • Low monthly premium (payment to get the Apple Health Insurance plan)
  • Slightly higher monthly premium

Every year in April, WA State may adjust the amount of income a family can make to qualify for Apple Health for Kids. The premium amounts for Apple Health for Kids with premiums may also change. These changes take inflation and Apple Health program costs into account.

To check if  your family income meets the limits for Apple Health for Kids, go to the WA State Health Care Authority page for Children.

Exception: children of public and school employees who have access to, or are enrolled in health insurance coverage under PEBB or SEBB programs may be eligible for Apple Health for Kids with premiums.

Important to Know:

Apple Health for Kids includes “continuous coverage”. This means a child or youth can stay on Apple Health for Kids even if their family’s income goes above the Apple Health income limits during the continuous coverage period.

This rule applies to free Apple Health for Kids (Medicaid) and Apple Health for Kids with premiums (CHiP). The rule applies to both “with premium” plans.

  • For free Apple Health for Kids: Children birth to age 6 have continuous coverage from when they are enrolled until their 6th birthday.
  • For Apple Health for Kids with premiums, children from birth to age 6 have continuous coverage for 12 months at a time.
  • From age 6 to age 19, all three Apple Health for Kids programs have continuous coverage for 12 months at a time.  

If a child loses their coverage and needs to re-enroll, learn more on the HCA website or by emailing HCA at AskMAGI@hca.wa.gov.

Protections for children’s health insurance: New federal rules for Medicaid and CHiP

The new rules start as of June 1, 2024, but states have some time to make changes to their programs. WA State already follows these rules, but the new rules prevent WA State from doing any of these things in the future.

States will not be allowed to:

  • Require a waiting period before a child can be covered by Medicaid or CHiP health insurance
  • Stop a child’s Medicaid or CHiP health insurance if the family misses premium payments, during the continuous coverage period
  • Make a family pay back the unpaid premiums before a child can re-enroll after their continuous coverage period runs out, or charge an enrollment fee
  • States can’t put a dollar limit on benefits for CHiP. (Medicaid doesn’t allow dollar amount limits). Benefits can be limited in terms of what services are covered, or how often a service can be used. For instance, a state could decide CHiP will only cover a total of 12 visits for physical therapy in one benefit year

Health Coverage for Teens and Young Adults

Teens under age 18 who want or need to get health care coverage without their parents may be eligible for Apple Health under one or more of these conditions:

  • Live separately from parents or guardians and are not claimed by them as a tax dependent
  • Are pregnant
  • Need birth control or STI (sexually transmitted infection) care

To apply, follow these instructions on the Fact Sheet for Apple Health Teen Application Process.

Young adults aged 19 and up may be eligible for Apple Health if they meet income guidelines or have been in foster care. Apply online at Washington Healthplanfinder.

Other WA State Medicaid programs that may help people who care for children, or who are pregnant:

Parents and Caretakers

Pregnant Individuals

Foster Care

Resources:

The Family to Family Health Information Center (F2FHIC)

Helpline at PAVE

Informing Families

Medicaid Basics (article from PAVE)

WashingtonLawHelp.org

Washington State Health Care Authority

Washington State Healthplanfinder

WithinReach

Changes to improve monitoring for quality and improve oversight of HCBS Waiver Programs

New rules

The new rules will apply to § 1915(c) HCBS waivers and §§ 1915(i) state plan services, (j) personal assistance services, and (k) Community First Choice. The new rules will also apply under § 1115 demonstration projects unless specifically waived, and under FFS and managed care delivery systems.

  • Update functional assessments and person-centered plans at least once every 12 months;
  • Establish grievance procedures for Medicaid beneficiaries receiving certain HCBS services in FFS (there are already grievance procedures applicable to managed care);
  • Establish an incident management system to identify, investigate, and resolve critical incidents, including reports of abuse, neglect, and financial exploitation;
  • Provide assurances that payment rates are adequate to ensure a sufficient direct care workforce;
  • Collect and report data to monitor access (e.g., waiting lists, average amount of time between approval for and delivery of HCBS services, percent of authorized hours provided); and
  • Report on core measures in the HCBS Quality Measure Set.

Healthcare in Transition

Posted on by Nicol Walsh

Healthcare transition, like all other aspects of transitioning to adult care and services, can be difficult. However, if teenagers and families plan ahead for healthcare changes that occur when a child becomes an adult, things can go smoothly and be successful. Here are some resources and information for making the health care transition to adult care successful and seamless.

There are two main components for individuals transitioning from pediatric (children’s) to adult health care.

  • New medical providers and systems, including changes in insurance.
  • The young adult’s new responsibility to be in charge of their own health care.

Health Insurance and Providers

For individuals on Medicaid, Medicare, or private health insurance, eligibility, cost, and what services are covered may change.

Washington’s Medicaid option, Apple Health, has different financial requirements for adults than they do for minors. See the chart below for current income requirements for Apple health.

ProgramSingle person2-person house-hold3-person household4-person household5-person household6-person household7-person household
Apple Health for Adults, age 19 through 64 years of age$1,677 monthly$2,268 monthly$2,859
monthly		$3,450
monthly		$4,042
monthly		$4,633
monthly		$5,224
monthly
Current income requirements for Apple Heath
  • To apply or renew for Apple Health, go to the Health Plan Finder website.  Even if an individual is not eligible for fully subsidized healthcare, the Health Plan Finder can reveal some low-priced options. 
  • For young adults on their parents’ private insurance, they will have coverage under their parent’s plan until they are 26, at which time they will need to apply for their own health insurance.  The Health Plan Finder can help you find affordable options, including Apple Health.
  • For individuals under 65 who are receiving Medicare due to a disability, insurance should not change due to the transition to adulthood.

A person’s health insurance may limit the health care providers available. Once you and your family know what type of health insurance you will have, you can select from physicians and other health professionals who accept that insurance. Most medical practices either list what insurances they accept, or you can call the office and ask. Health care insurance plans may also send information on where to find a provider, or you may find it on their website.

Taking on Responsibility for Health Care and Decisions

Healthcare is just one of many new responsibilities that young people take on as they become adults.  Parents can avoid overwhelming a teen with new obligations, beginning with giving younger teens options and increasing tasks to help them adapt to this change.  There are several resources for families and youth to use in this transition:

  • Family to Family has a youth-written curriculum about Transitioning to Adult Doctors for individuals with disabilities that can help teens start their medical transition journeys.
  • Charting the LifeCourse™ was created by families to help individuals and families of all abilities and all ages develop a vision for a good life, including their health care.
  • Got Transition is a comprehensive website about the transition to adult health care, with quizzes, FAQs, and timelines to make it easier to understand.
  • The Center for Transition to Adult Health Care for Youth with Disabilities is a national health care transition resource center. The goal of the center is to empower youth and young adults with intellectual and developmental disabilities (ID/DD) ages 12-26 to direct their own transition from pediatric to adult care with no reduction in quality of care and no gaps in service.

Beyond these resources, the most useful are young adults, whether you are the parent/caregiver or a transitioning individual. It’s important to recognize that lived experience gives knowledge even in a new situation. Parents/caregivers and young adults have knowledge of medical need that may not be in a chart, emotional or behavioral challenges, developing self-determination that supports transition, and other important things only you know. Next in line are the current medical providers and specialists. They have helped numerous other teens transition to adult healthcare, and they are a part of developing the care plan, a critical resource for transitioning to an unfamiliar doctor or clinic when a young adult may have complex care needs. Doctors’ office staff are also used to dealing with these issues and may have some good planning advice for families. Lastly, advice from families who have already helped a child transition to adult care can know what to do—and what not to do!  Parent-to-Parent can match parents up with families who have already gone through such transitions with those who seek their knowledge and experience.

5 Tips for Success in Healthcare Transition
Download The Five Tips for Success in Healthcare Transition


Including Health Considerations in the Transition Plan

Parents, Students, and everyone on the IEP team should think about how health and healthcare can affect a student’s goals for college, work and living on their own. PAVE has made a fillable form that you can download when starting to think about this area in transition.

Including Health Considerations in the Transition Plan
Download Including Health Considerations in the Transition Plan

Medicaid Basics

Posted on by Nicol Walsh

A Brief Overview 

  • Medicaid is state-run health care for those with limited income or individuals with chronic or complex health care needs with special circumstances. 
  • Medicaid is available to many families In Washington state who are not eligible for Medicare and are below certain income levels. 
  • Apple Health for children has broader eligibility requirements, meaning that more children in Washington state can be covered for low or no cost. 
  • You can apply for Medicaid through the Washington Health Plan Finder. 
     

Full Article 

Medicaid is a federal health care program that each state manages based on their own states legislative system. It is set up for individuals and families with limited income or special circumstances such as a genetic, medical, or job or accident-related disability. This health care covers physical and mental health and can be low to no-cost. To be eligible for fully subsidized (free) Medicaid you must meet the household income eligibility and not be eligible for Medicare. However, Medicaid for those with Medicare can help with some expenses not covered by Medicare for those with low income. It is available for an individual on classic Medicaid whose parent or guardian has died and whose benefits pass to their child. In the state of Washington, Medicaid is generally known as Apple Health and is administered by the Health Care Authority. 

There are two main types of Medicaid available in the state of Washington: Apple Health (income based), and Classic Medicaid. The day-to-day administration of Apple Health and Classic Medicaid is run by one of five Managed Care Organizations, or MCOs. Apple Health covers individuals up to the age of 6 and eligibility is based on household income. Apple Health has higher income limits for children than adults, meaning that many children in Washington State are eligible for free Apple Health, even when their parents or guardians are not..  If you have Apple Health, you will get healthcare from the providers at one of those MCOs. If you are found (determined) to have a disability or a disabling medical condition and are under the age of 65, you are eligible for Classic Medicaid if you are on Social Security Income or Supplemental Security Income (SSI). This is also considered Apple Health and under one of the 5 MCOs. If an infant, child, or youth through age 21 is in the foster care system they will be covered by Apple Health and will get their healthcare from one specific MCO no matter where they live in the state. 

Determining Eligibility for Apple Health 

Apple Health has different eligibility requirements for children and adults. These differences are listed below, including the maximum monthly household income requirements that families may have to obtain coverage. 

Eligibility for Apple Health for Children: 

  • Children of public employees with access to health insurance coverage under the PEBB or SEBB programs are not eligible for Apple Health for Kids with premiums. 
  • Low-cost coverage (Apple Health with premiums) is only available to children who are uninsured when household income is too high to qualify for free Apple Health (no premiums) 
  • Income requirements for free coverage: (2024) 
 Single Person 2-Person Household 3-Person Household 4-Person Household 5-Person Household 6-Person Household 7-Person Household 
Apple Health for Kids $2613 monthly $3534 monthly $4455 monthly $5375 monthly $6296 monthly $7217 monthly $8138 monthly 
  • Income requirements for Tier I subsidized coverage ($20 monthly per child; $40 family maximum): 
 Single Person 2-Person Household 3-Person Household 4-Person Household 5-Person Household 6-Person Household 7-Person Household 
Apple Health for Kids Tier I $3220 monthly $4355 monthly $5490 monthly $6625 monthly $7761 monthly $8896 monthly $10031 monthly 
  • Income requirements for Tier II subsidized coverage ($30 monthly per child; $60 family maximum): 
 Single Person 2-Person Household 3-Person Household 4-Person Household 5-Person Household 6-Person Household 7-Person Household 
Apple Health for Kids Tier II $3852 monthly $5210 monthly $6568 monthly $7925 monthly $9283 monthly $10641 monthly $11999 monthly 

Eligibility for Apple Health for Adults: 

  • For those aged 19 through 64. 
  • For U.S. citizens or those who meet Medicaid immigration requirements. (Including Washington residents from the Republic of Palau, the Republic of the Marshall Islands, and the Federated States of Micronesia) 
  • For those who are not entitled to Medicare.  
  • Have annual household income at or below the Medicaid standard: 
 Single Person 2-Person Household 3-Person Household 4-Person Household 5-Person Household 6-Person Household 7-Person Household 
Apple Health for Adults $1677 monthly $2268 monthly $2868 monthly $3450 monthly $4042 monthly $4633 monthly $5224 monthly 

How to Apply 

There are a couple of ways to start the process of getting Medicaid or other subsidized health care plans. The Health Insurance Marketplace Calculator provides estimates of health insurance premiums and subsidies for people purchasing insurance on their own in health insurance exchanges or “Marketplaces.” The Washington Health Benefit Exchange can help families and individuals find subsidized health care in their area.  

When ready to apply for coverage from Apple Health: 

  1. Review adult and/or child income eligibility requirements. 
  1. Read the Eligibility Overview to determine if Apple Health is the best fit for you and your family. 
  1. Create an account on Washington Health Plan Finder. 
  1. Collect and enter information into the Washington Health Plan Finder application, WAPlanfinder Mobile App, downloadable paper form, or call the Washington Healthplanfinder Customer Support Center at 1-855-923-4633. 
  1. Review the five Integrated Health Care Plans responsible for Medicaid in Washington, not all of which may be available in your location. 
  1. If you need further help, contact a free Health Plan Navigator. 

To get signed up with Medicaid Classic, go online to Washington Connection and select “Apply Now,” or call 1-877-501-2233. For additional help signing up for Medicaid in Washington, help is available from Parent help 123, which can be contacted at 1-800-322-2588, or PAVE. If, in looking at the information above, you feel that you or the person you care for has lost Medicaid through a mistake or a problem with the system and going through the Washington Connection is not resolving the issue, the Federal Government is asking that you go through Healthcare.gov to get help with re-enrollment.  

Disability and Sexual Health Education

Posted on by Nicol Walsh

A Brief Overview

  • Sexual education is a legal requirement in Washington State. Read on for information about what the state requires and resources for supporting a child to learn developmentally appropriate information related to health and sexuality.
  • The state provides a Sexual Violence Prevention website page with information about work underway toward the prevention of child sexual abuse.
  • Helping young people talk about sexual consent can support students in learning to make healthy choices that serve them for a lifetime. Rooted in Rights of Washington offers a step-by-step guide for talking about consent with youth with disabilities.
  • May is Sex Ed for All Month. Sex Ed for All Month is an opportunity to raise awareness and call for real investment in sex education in schools and communities across the country. Sex Ed for All Month is coordinated by the Sex Education Collaborative, in collaboration with a national coalition of sexual and reproductive health, rights, and justice organizations committed to ensuring equitable and accessible sex education for all young people nationwide. For resources, visit The Healthy Teen Network
  • For a library of resources, visit the Parent Center Hub: Sexuality Education for Students with Disabilities.

Full Article

Parents or guardians are the first and primary sexual health educators of children. What parents and caregivers believe, say, and do can have a powerful influence on the development of healthy sexuality in children. This article provides resources to support healthy sexuality for families and youth, including standards and instruction that align public schools with state laws.

Washington state law requires schools to provide education about the life-threatening dangers of HIV/AIDS, its transmission, and its prevention. HIV/AIDS prevention education is required to begin by grade 5 and is provided annually, in accordance with the AIDS Omnibus Act (RCW 28A.230.070). The state’s model for providing this education is called the KNOW Curriculum, developed for grades 5-8.

The topic of child sexual abuse prevention is addressed by Erin’s Law (HB 1539), passed by the WA legislature in 2018. The bill named the Office of Superintendent of Public Instruction (OSPI) as the lead agency tasked with reviewing curricula and assisting the Department of Children, Youth, and Families (DCYF) with developing a coordinated program for the prevention of child sexual abuse in grades K-12. OSPI provides a Sexual Violence Prevention website page that includes information about work underway.

Inclusive comprehensive sexual health education (CSHE) is required in Washington schools, beginning with the 2022-23 school year. Planning and implementation has been underway since 2020. Instruction must be consistent with Health Education K-12 Learning Standards, which provide a framework for comprehensive instruction, and the provisions of RCW 28A.300.475.

For students in grades 4-12, CSHE is defined in the law as “recurring instruction in human development and reproduction that is medically accurate, age-appropriate and inclusive of all students…using language and strategies that recognize all protected classes.” Disability is a protected class. Therefore, CSHE offered to students in grades 4-12 must be inclusive of disability.

Instruction for students in grades Kindergarten-3 is defined in the law as Social-Emotional Learning. This instruction is not focused on human development or reproduction.

CSHE that addresses consent and provides opportunities for developing communication and decision-making skills can support students in making healthy choices that serve them for a lifetime. Consent is defined as granting permission for something to happen or agreement to do something. Consent is important to understand in the context of sexual activity. Rooted in Rights of Washington provides written information and a video within its step-by-step guide for talking about consent with youth with disabilities.

Dating and sexual intimacy are subjects that can be addressed through Supported Decision Making, a legal option in Washington State. Washington law (Chapter 11.130 in the Revised Code of Washington) includes Supported Decision Making (SDM) as an option under the Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act. The format for an SDM agreement is up to the individual and their supporters. A sample form is available for download from WashingtonLawHelp.org.

The state has developed curricula and teaching tools that address the many facets of human relationships, from developing social skills and friendships to assuming responsibility for one’s own body, including sexuality. Find these resources on OSPI’s website page called Sexual Health Education.

The Center for Parent Information and Resources provides a library of resources, including several related to the role of parents: Sexuality Education for Students with Disabilities.

Respiratory Disease Health Advisory

Posted on by Nicol Walsh

Washington State is experiencing an overwhelming number of children and babies being hospitalized for respiratory diseases. The CDC has issued a Health Advisory for the state as the rise in the Flu, Respiratory Syncytial Virus (RSV), and COVID pushes the limits of pediatric hospitals. 

A Brief Overview 

  • Prevention is the best way to fight respiratory illness. 
  • Vaccinations for Flu, Covid-19 and RSV. 
  • Good Hygiene: Wash your hands and cover coughs. 
  • Stay home if you feel like you are getting sick and if you are sick.  

Full Article 

Protect children by making sure that they are up to date on flu shots and COVID boosters. Vaccinations reduce the severity of an infection if a child is exposed. 

Remember lessons learned in the first COVID surges. Wear masks in crowded spaces. Wash hands frequently and use hand sanitizer to reduce the risks of infection. 

What should you do? 

If your infant or child is sick, here are some online resources to help: 

Core prevention strategies for Respiratory illnesses. 

  • Current immunizations for Flu, Covid-19 and RSV. 
  • Hygiene- wash your hands frequently. 
  • Crack a window for fresh air or run an air purifier for cleaner air. 
  • Treatment for Flu and Covid-19. 
  • Stay home and prevent the spread of respiratory illness. 

Additional steps: 

  • Wear a mask. 
  • Social distancing.  
  • Have free Covid-19 at home test kits. 

How to Navigate School for Youth with Mental Health Concerns

Posted on by Nicol Walsh

Staff from PAVE’s Parent Training and Information (PTI) program provided a workshop as part of the statewide virtual conference hosted by NAMI Washington October 16, 2021.

This recorded training provides a general overview of student rights in education. Some information is specific to students impacted by mental health conditions.

The formal content begins about four minutes into the video and ends at about 46 minutes.

Here are a few examples of topics addressed:

  • Does my student have the right to be evaluated for special education if they refuse to go to school because of anxiety?
  • What accommodations are reasonable to ask for?
  • What services might be possible for my student who struggles with emotional regulation?
  • Can counseling be a related service?
  • Are there protections for a student because of suicidal thoughts or attempts?
  • What support is available for a student with a disability condition who isn’t prepared for adulthood because high school got interrupted by the pandemic?

Additional information about mental health education and services at school, the overall layout of youth behavioral health in Washington State, and where to find family support is included in a PAVE article: Mental Health Education and Support at School can be Critical.

To seek education, training, and support from the National Alliance on Mental illness, look for a virtual training or information about a local affiliate near you, listed on the NAMI WA website.

One place to access behavioral health services for children and youth anywhere in Washington is through the Seattle Children’s Hospital Mental Health Referral Service: 833-303-5437, Monday-Friday, 8 a.m. to 5 p.m.

Families and young people can reach out for individualized assistance from PAVE’s Parent Training and Information (PTI) staff at PAVE. Click Get Help or call 800-572-7368.

After you view the video, please take a quick moment to complete our survey. Your feedback is valuable!

Riding the Waves: Vaccine Roll-Out in WA

Posted on by Nicol Walsh

This year the waves of information have been high at times, often, and the content can shift or change.  And here comes the much anticipated COVID Vaccines.  This video was created to address some of the most common questions that may rise to the surface and where to go to find how the vaccine is rolling out in Washington State. Visit the Department of Health for the most up-to-date vaccine distribution plans.

Help for Understanding Health Insurance

Posted on by Nicol Walsh

Healthcare insurance includes words and abbreviations that can be confusing and hard to remember. This article describes a few key terms to demystify the health insurance world for Washington State families. Washington Healthplanfinder.org is a place to research insurance options statewide, with English and Spanish options.

Managed Care Organization (MCO)

A Managed Care Organization (MCO) is an agency that coordinates medical services and reimburses providers.

State medical insurance in Washington is called Apple Health. Apple Health pays a monthly premium to an MCO that an individual or family chooses to manage preventive, primary, specialty, and other health services. Apple Health also pays for some services directly, through Fee for Service (FFS).

The term “provider” describes any health care professional or facility that provides treatment. Doctors, nurses, mental health professionals, physician assistants, dentists, therapists, behavior specialists, and many other professionals are considered providers.

Clients enrolled in managed care must seek providers who are part of their plan’s network unless there is an emergency or prior authorization is arranged. Prior authorization means the insurance company agrees to pay for a service, treatment, prescription drug, medical equipment, or something else because it is determined to be medically necessary.

The Apple Health system includes five MCOs. Not all plans are available in all areas of Washington State. ​

  • Amerigroup (AMG)
  • Community Health Plan of Washington (CHPW)
  • Coordinated Care of Washington (CCW)
  • Molina Healthcare of Washington, Inc (MHW)
  • United Healthcare Community Plan (UHC)

For complicated circumstances, an MCO may recommend a case manager be assigned to support an individual’s care. Families also have the option to request case management, especially if locating providers is difficult to meet unique or substantial needs.

Health Maintenance Organization (HMO)

A Health Maintenance Organization (HMO) is a type of MCO.  An HMO is an independent system that requires enrollees to seek care within a specific network of hospitals and providers. An HMO plan is based on a network of providers who agree to coordinate care in return for a certain payment rate for their services. 

Preferred Provider Organization (PPO)

A Preferred Provider Organization (PPO) is another type of MCO. A PPO generally will allow individuals to choose their providers and does not limit reimbursement to providers in a specific network. Because of that, a PPO tends to be more expensive than an HMO.

What is the difference between Medicaid and Medicare?

Medicaid is income dependent, and Medicare is not. Both provide government-funded healthcare.

Medicaid is state-managed to provide free or low-cost medical coverage for individuals or families who qualify based on income. Washington’s Medicaid program is Apple Health.

Medicare is a federal health insurance program for individuals age 65 and older and for those with qualifying disabilities. Medicare is not dependent on income.

Copayments, Premiums, and Deductibles

When healthcare is not free, the cost to the family adds up through the copayments, premiums, and deductibles. Here’s what that means:

  • Copayment: a specific fee for a visit or procedure.
  • Premium: payment for the insurance. An individual might have premiums withheld from a paycheck, or an employer might agree to pay all or part of the premium.
  • Deductible: the amount of money an individual must pay each year before insurance payments “kick in.” After a deductible is met, the patient may still make copayments or pay a percentage of the cost, depending on the plan. Supplemental insurance through Medicare is sometimes an option to cover deductible expenses.

What is a Medicaid Waiver?

A Medicaid waiver allows the federal government to waive rules that usually apply to the Medicaid program. The intention is to reimburse for services that would not otherwise be covered by Medicaid. Waivers generally provide local, non-institutional solutions for individuals with disabilities. For example, in-home care paid for through a waiver might support someone to live in the community.

Medicaid.gov provides a Washington Waiver Fact Sheet that outlines waiver programs available in Washington State.

An Illustration of the insurance terms described in this document

Download the illustration as a PDF – Health Illustrative

Collaboration on Many Different Levels

Posted on by Nicol Walsh

This article was submitted by a parent that receives services from the Department of Services for the Blind (DSB) to share her experiences with other parents.

Check out DSV’s website by cliking here

By Emily Coleman

My son, Eddie, was born 10 ½ years ago with Optic Nerve Hypoplasia.  I learned quickly that I needed caring professionals to surround us and help us determine the best way to educate our son. I realized that without people who really knew blindness in our lives, we would be at a loss. From the beginning of his life, collaboration became not only important, but a lifeline. It also inspired me to get further involved in the field of blindness as an educator.

For the past few years, I’ve been working as a Teacher of the Visually Impaired (TVI) in Eastern Washington through the WA State School for the Blind’s Outreach program.  While working in multiple districts, I was able to collaborate closely with students, parents, and a variety of educators.  As a parent of a child who is blind, I learned quickly that everyone brought something unique to the “table” when discussing Eddie. As a TVI, I learned that was true for all children who are blind/visually impaired (B/VI).

Last spring, I moved into the position of Outreach Director at the WA State School for the Blind (WSSB) and WA State Vision Consultant with WA Sensory Disability Services (WSDS). In this new role, I’ve been able to take collaboration to a whole new level.  I’ve had the opportunity to work outside of my family, and my region, and learn from professionals around the state. It’s been a fast-paced adventure that I’ve enjoyed every day.

When I agreed to take this new position, I had to really think about the role WSSB and WSDS play and how I can best serve their missions and the students who are B/VI in our state. I obviously don’t know everything in regards to educating children who are blind…and I never will. As a parent, and as a teacher, I sought out the expertise of others and guidance through collaboration. This drive to collaborate to best serve kids is also shared by WSSB and WSDS, and so I knew that we were on the same page.

WSSB provides support to students via an on-campus program, but also supports students regionally via technology consultation, distant-education courses, online resources, professional development, contracted services, and more…including assistance with birth-through-3 services statewide. WSDS provides many of those same things, but also works in collaboration with the Deaf-Blind Project, Center for Childhood Deafness and Hearing Loss http://www.cdhl.wa.gov, WSSB, and other agencies, including DSB.

The combined knowledge and experience in WA State is substantial, and collaborating is an effective way to serve kids and move them towards greater independence. I invite you to reach out to me as a parent, educator, or consultant if you have questions or concerns regarding your own child or a student who is B/VI. Whenever possible, I’ll be a gateway to other professionals and further expertise, through the act of collaboration.

Emily Coleman

emily.coleman@wssb.wa.gov

 

Depression and the Autism Spectrum

Posted on by Nicol Walsh

It is a common misconception that people who have Asperger’s or Autism do not get depression.

In fact this is more common than you think!

Suicidal thoughts are ten times more likely in people with Asperger’s or in the Autism Spectrum.  Survey data was used on 256 men and 118 women who were diagnosed:

66% reported suicidal thoughts

35% reported plans or attempts at suicide

31% reported depression

Depression can be caused by:

Social troubles because you do not seem to fit in

Guilt or regret over past actions/outbursts/meltdowns

Overwhelming feelings and thoughts

Anxiety and Panic Attacks

Miscommunications / Misunderstandings

Fatigue or Tiredness due either to the condition or to medications taken for the condition (e.g.: Ritalin)

Here are some comments people with Asperger’s have made:
(Comments have been made anonymously)

“I have been diagnosed with Asperger’s syndrome and depression.
My repeated obsessive thoughts turn into that sadness and also when someone gets frustrated with me like my parents. I don’t even know how I feel sometimes. When I can’t learn from my mistakes as fast as everyone else. I feel hopeless because it’s how I’m made to make mistakes over and over without ending.”

“I understand. Repeating the same mistake over and over…I would always forget to leave my coat in my locker at school (because of some rule) and 4 days out of 5 I would forget it. Consistently. And my repetitive obsessive thoughts also turn into sadness, but for me this occurs irrespectively of being yelled at.”

“I have Asperger’s and am high functioning to a degree. I also suffer from depression and anxiety which a lot stems to the fact my circle of friends has drastically dropped since my teenage years, I’m nearly 23 and I don’t go out like most people my age do. Mainly because I socially isolate myself. I find situations arise when I go out, for example…a club I used to go to has very loud bands on Friday nights, I can’t hear my thoughts it screws with my head. It depresses me because when I was younger I had loads of friends, now I’m a social outcast who feels nothing but bitterness and anger towards a lot of society. Al lot of my friends don’t want nothing to do with me anymore. Best friends have come and gone and now I feel alone. I live alone which doesn’t help and rely on Xbox live to chat to people. I just wish sometimes I wouldn’t come out with weird stuff. It freaks me out as well as it does to other people.”

The first step to helping, is by recognizing the signs:

A suicide attempt is rarely made all of a sudden.  It is most common for individuals to shift between the stages on a continuum which range from thinking about suicide to committing suicide.

The stages can go back and forth and are not limited to:

Planning – for example, giving away possessions that were thought of as special to them.

Organizing means – a fascination with a certain weapon that they were not interested in before, for example.

Suicide attempt

Some may start in self harming behavior which can lead to death while the goal is not to actually die.  This is because these individuals may not have actually thought of the consequences and finality of suicide.

Pay attention to:

Statements like “I would be better if I just died”

Threatening to commit suicide

If they are more withdrawn or depressed: not participating in their routine activities, they avoid communicating even more than usual.

Recognizing the signs is even harder when some people with Autism or Asperger’s cannot communicate the conventional way.

Here is how you can help someone who is depressed

People who consider suicide mostly need to know that others do care:

Even if you don’t talk, just being there helps

Let them know that most people think about suicide at one time or another, and thinking about suicide does not mean that things can’t get better.

Listen to what they are saying about themselves and their life

Avoid saying things like “you should be grateful to be alive!” or “You will be fine”

Tell them that you will always be willing to talk and there are others who care

Inspire them to make new friends or contact old friends or even call the Suicide Prevention Lifeline. https://www.suicidepreventionlifeline.org/– 1-800-273-8255.  The Lifeline offers online chat, which is a good option when individuals are non-verbal or when social anxiety is high.

If you see that there is an imminent danger of the individual to commit suicide:

If it is an emergency, call 911

Contact outside help or make sure they contact their Doctor

Monitor their temperament and establish a follow up plan when there are changes – the plan can include calling the Doctor, making sure they call the National Suicide Prevention Lifeline – https://www.suicidepreventionlifeline.org/ or call 1-800-273-8255.

Make sure to remove any means that can facilitate suicide – prescription drugs, weapons, etc.

Most of all let them know that there are always people who are ready to help them.  It is important for them to know that it’s ok to ask for help and let either family members, friends or professionals how they feel.

References:

Synapse, Reconnecting Lives, Fact Sheets:  Depression, Suicide Risk and Autism
Retrieved from – http://www.autism-help.org/family-suicide-depression-autism.htm
Collingwood, J. Suicidal Thoughts 10 Times More Likely in Adults with Asperger’s.
Retrieved from http://psychcentral.com/news/2014/10/13/suicidal-thoughts-10-times-more-likely-in-
adults-with-aspergers/76016.html
Cassidy, S. et al. Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome
Attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry, 25 June 2014 doi:
10.1016/S2215-0366(14)70248-2
Raja, M. Suicide risk in adults with Asperger’s syndrome. The Lancet Psychiatry, 25 June 2014
Doi:10.1016/S2215-0366(14)70257-3