Holiday Survival Tips For Families with Special Healthcare Needs

A Brief Overview 

Every family experiences holidays and end-of-year transitions differently. This article provides a sampling of ideas for families with children experiencing special healthcare needs. If a child also experiences behavioral difficulties, you may wish to read Home for the Holidays: The Gift of Positive Behavior Support 

Here are some quick takeaways: 

  • Keep to your everyday schedule and routine as much as possible to minimize medical and behavioral impacts. 
  • Add fun with home-based holiday activities and traditions tailored to your family’s needs or select family or group activities which work with your child’s medical needs. 
  • Plan and save surprises too: Mix up the activities so children can help with some planning and enjoy a few surprises. 
  • Plan for health and safety if travel is on the schedule
  • Families need a village: Help is a present, but sometimes you must ask for what is on your list. 
  • Gratitude is a gift: Moments of thankfulness calm the mind. For additional stress-reducers, PAVE provides a practical gift: Self-Care Videos for Families Series. We also offer short videos to help everyone find calm (Try Hot Chocolate Breath!): Mindfulness Video Series

Full Article 

Decide Which Routines and Schedules Might Be “Holiday Flexible” 

Many children with disabilities rely on schedules, either as a coping strategy or for medical reasons. It is critical to keep your child on schedule during the holidays as much as possible. This may mean leaving an event early or arriving later to accommodate tube feedings or respiratory treatments. It may mean putting your child to bed on time, even at Aunt Sally’s midnight party.” -Susan Agrawal, complexchild.org 

If your family can accommodate a bit more flexibility, a “Holiday” sleep schedule with an extra hour of special family time before bed might add a fun holiday flavor. For others, sleeping in or staying in jammies longer than usual might create a relaxing holiday feel. Be sure to call out these relaxed rules as holiday specials so everyone understands they are temporary changes and part of the “break.” 
 
Add Fun 

Families might set aside, or add onto ordinary routines, to: 

  • Bake 
  • Sing 
  • Read special stories 
  • Play games together 

On its website, WestEd.org, a California non-profit, provides a guidebook for families staying home for health and safety reasons: Caring for Young Children While Sheltering in Place.  Activity videos (story-based yoga, for example), easy-to-learn songs, arts-and-crafts, sensory play, and cooking with kids are among offerings for developmentally appropriate activities.  

Understanding your child’s healthcare needs and vulnerabilities can help with deciding which activities are right for your family.  

  • Drive-through light shows, and streaming concerts, theater, and holiday events are options in some areas that won’t expose a medically vulnerable child to other people’s germs. 
  • If weather and your family’s needs permit, outdoor holiday activities with groups of people are less likely to spread illness as we all learned during the height of the COVID-19 pandemic. Think of tree lightings, caroling, snow-sculpture or snowman-making events, and of course winter sports, if appropriate, for your child and family. 
  • One tradition that has always been virtual is the NORAD Santa tracker, which keeps tabs on Santa’s travel on Christmas Eve and has kid-centered games and songs. 

Finding the “just-right” amount of holiday celebrating can be tricky, so keep the Three Bears/Goldilocks principle in mind. For children who understand this theme, families can use the classic story to talk about how everyone makes choices about what is the “just right” amount of celebrating, eating, screen time, sleeping. 

Plan and Save Surprises Too 

A theme for the year can add a new flavor to family traditions. Here are some suggested themes: 

  • How I celebrated when I was a kid. 
  • Christmas 1821, 1721, etc. 
  • Holiday food, decorations, stories, music, etc. from another culture. 

The family can research the theme together to come up with ideas and activities. A theme night might include a chance for each family member to share something or lead an activity. On story night, each person might share a favorite holiday memory or a made-up story. If extended family want to take part, a video conference might be an added element to the evening. 

Adults can set aside a few ideas to save for in-the-moment surprises to sprinkle in. A prize, special treat, well-told joke, customized family game, or a surprise “guest” on the phone are a few ideas to plan out in advance. 

Travel 

For families choosing to travel, bags with medication and equipment still need to include masks, hand sanitizer, and sanitizing wipes. Even with mask mandates mostly a thing of the past, it’s sensible to have these on hand for crowded airports and planes and visiting more vulnerable, elderly relatives.  

If plans include planes and trains, be sure to let agents and attendants know about a family member’s special accommodation needs.  

  • Washington travelers can make preflight preparations from Sea-Tac Airport by sending an email to the Sea-Tac Airport customer service.  
  • The phone number for the Spokane Airport Administrative Offices: (509) 455-6455. Amtrak provides a range of Accessible Travel Services
  • TSA Cares is designed to aid travelers with disabilities with TSA screening procedures. Call them at 855-787-2227 (8 AM to 11 PM Eastern Time M-F, and 9 AM-8 PM Eastern weekends and holidays). 

Sugary treats might impact planning for children with diabetes: An insulin pump might help during the temporary splurges so a child can enjoy the holiday without feeling too different or overwhelmed. 

Visions of sugar plums might need a different flavor for children with specific allergies or food sensitivities. Being prepared with substitutions may prevent a child from feeling left out. If someone else is doing the cooking, be sure to share about any severe allergies to make sure utensils and mixing containers do not get cross-contaminated. 

Families Need a Village 

No holiday is ever perfect, and unrealistic expectations can cause a celebration to sour. Communicating with relatives and friends can help: 

  • Make a “Gift Wish List” for your child with special healthcare needs to let relatives and friends know what gifts will be good for your child based on what they might need to avoid and what they can use and enjoy. Many large retailers (Target and Kohls, for example) carry lines of adaptive clothing and sensory products and toys. 
  • Ask for understanding and support from family and friends to reinforce positive messages and realistic expectations. Saying no might be important, so choose what works and toss the guilt if the family needs to pass on a tradition or an invitation. Or use the “No, but” strategy and offer an alternative such as a different time or activity. 
  • As always, remember to plan self-care, whether it is a soak in the tub, a special movie with popcorn, or simply a few pauses for five steady breaths. “Putting your own oxygen mask on first” will make you a stronger caregiver.  

Gratitude is a Gift 

Gratitude helps the mind escape from stress-thinking and move toward feelings of peacefulness and grace. Taking a few moments to mindfully reflect on something that brings joy, beauty, love, sweetness—anything that feels positive—can create a sense of ease. An agency called MindWise Innovations provides tips to practice gratitude during the holidays, including this one: Make a list of things you have instead of things you want.  

For additional stress-reducers, PAVE provides a practical gift: Self-Care Videos for Families Series. We also offer short videos to help everyone find calm (Try Hot Chocolate Breath!): Mindfulness Video Series

Susan Agrawal, writing on complexchild.org, reminds us “No holiday is ever going to turn out like you want it to, even if you have the most perfect storybook family in existence. Don’t expect perfection or anything even close to perfection. For some families, getting through the holidays may be as much as you can expect. For other families, changing holiday traditions may make the season not feel the same. That’s OK. Instead, try to find the blessings in the season, whether that means seeing family members or celebrating your child’s inch stones.”  

Additional Holiday Resources 

Giving the Gift of Sensory-Regulation: Supporting a Happy Holiday Season for All 

Home for the Holidays: The Gift of Positive Behavior Support 
 
https://wapave.org/holidays-can-hurt-when-trauma-is-present/10 Tips to Surviving the Holidays When Your Child is Medically Complex or Has a Disability 

Related 
 
Respiratory Disease Health Advisory 
 
Explore Adaptive Play with Your Child 

Gender Affirming Care

A Brief Overview

  • Sex and gender are separate, but related concepts.
  • Transgender and gender diverse individuals have special health care needs, but are the most likely to be dissatisfied with their health care or avoid medical care.
  • Gender affirming care is about knowledge and understanding, which can lead to better health care outcomes for individuals who are transgender or gender diverse.

Gender identity has become a hot topic in today’s political world. But beyond the politics, there are many young people that are struggling and often it is their physical and mental health that suffers the most from the misunderstanding between sex and gender, and the meaning of gender affirming care.

What is the difference between sex and gender?

Sex is determined by chromosomes passed down through genetics, with XY being male and XX being female. These chromosomes are responsible for the majority of our sexual-based differences, including genitals and hormones.  Most people are born with either XY or XX but not everyone is.

Gender, on the other hand, is a ‘social construct’ based on an individual’s apparent sex. Gender refers to an expressed societal norm often attached to a person’s sex, so a person with XX chromosomes would be expected to be feminine. For centuries, the English words sex and gender have been used interchangeably, so female and woman meant essentially the same thing.  Modern sociologists and psychologists state that although these terms are tightly bound together, they are not synonyms

Individuals who have a gender in alignment with their biological sex chromosomes are known as cisgender, while those whose gender is different than their biological sex chromosomes are known as transgender. Individuals whose gender does not fit neatly in either category are known as non-binary, genderfluid, or genderqueer, and are often referred to as gender diverse.  Some societies, including several Native American/Native Alaskan communities, recognize a third gender. Two-Spirit is a common term used in many indigenous communities throughout the Americas that encompasses cultural, spiritual, sexual, and gender identity.

What health care issues are there for individuals who are transgender or gender diverse?

Transgender persons are more likely to need some specialized care than their cisgender peers. Healthcare issues that disproportionately effect the trans community include sexually transmitted infections, depression, and substance use. These healthcare issues/needs are not solely due to the person being transgender but due to societal and medical ignorance and/or discrimination. Medical interventions can lessen the impact of these health issues, if an individual can find medical experts that they trust.

Transgender and gender diverse individuals are often more hesitant to go to a doctor because of perceived prejudices or past negative experience with doctors. According to the National Institute of Health, “Transgender men and women had the highest prevalence of being “not at all satisfied” with the healthcare they received.” In another survey, 29.3% of transgender and gender-diverse individuals said that they had experienced health care discrimination, and 21.6% postponed care due to fear of discrimination. This hesitancy to visit medical providers can result in the lack of preventative, and even emergency care, and negatively impact the healthcare and quality of life of transgender and gender diverse individuals.

The belief that medical personnel are not well equipped to deal with transgender patients is also felt by providers. While only around 10% of emergency department trainees surveyed felt uncomfortable treating trans patients, only 55.7% felt well prepared in attending to their transgender patient’s needs. Experts on transgender health believe that the best way to combat prejudice and lack of knowledge is through gender affirming care.

What is gender affirming care?

Despite what some political and media personalities may maintain, gender affirming care is concerned with the entirety of a person who is transgender or gender-diverse and is not wholly focused on hormones and gender-affirming surgeries.

The Standards of Care for the Health of Transgender and Gender Diverse People, Version 8 describes the goals of transgender health care services: “The goal of gender-affirming care is to partner with TGD [Transgender and Gender Diverse]  people to holistically address their social, mental, and medical health needs and well-being while respectfully affirming their gender identity. Gender affirming care supports TGD people across the lifespan—from the very first signs of gender incongruence in childhood through adulthood and into older age—as well as people with concerns and uncertainty about their gender identity, either prior to or after transition.”

What does gender affirming care look like for those under 18?

For most pediatricians, gender affirming care revolves around asking a child’s pronouns, and using those pronouns when talking to them. An awareness of disproportionate health issues, including risks to mental health, is important as well.

In some instances, puberty suppressants or hormones may be given to children or teens, but only after several visits and consultations with psychologists. Gender affirming surgeries are almost never performed on individuals under 18 years old. It is the knowledge and acceptance of a medical professional that makes the health care they provide gender-affirming.

Findings suggest that having a transgender-inclusive provider is associated with decreased rates of depression and suicidality. The Association of American Medical Colleges quotes one physician as stating “‘Most of them are happier, less depressed, and less anxious,’ says Adkins at the Duke Child and Adolescent Gender Care Clinic. “Their schoolwork often improves, their safety often improves.’”

While is illegal in Washington to deny care based on gender identity, it still may be difficult to find a healthcare provider that is transgender friendly. Word of mouth from other individuals who are transgender or gender diverse can be a great start. There is also an online LGBTQ+ Healthcare Directory which can be of assistance.

Additional Resources:

Gender Affirming Medical Coverage Rights – Both state law and the federal Affordable Care Act prevent health insurance companies from discriminating against someone based on their gender identity and related medical conditions. These rights apply to youth and adults.

Lavender Rights Project – Lavender Rights Project elevates the power, autonomy, and leadership of the Black intersex & gender diverse community through intersectional legal and social services

National Center for Lesbian Rights (serves all LGBTQIA+ identities) – NCLR is a national legal organization committed to advancing the civil and human rights of lesbian, gay, bisexual, and transgender people and their families through litigation, legislation, policy, and public education.

Seattle Children’s Gender Clinic Patient & Family Education – Includes resources for working with Seattle Children’s and general education documents regarding gender affirming care.

Helping a Loved One with a Fear of Needles Get Vaccinated

Families have different reasons for not vaccinating their children against COVID or other illnesses. The Washington Department of Health (DOH) reports that vaccination rates dropped 13 percent in 2021. If you’ve put off taking your child to get a vaccine because your child falls apart with fear at the sight of a needle, here are some tips and tricks to break through that barrier.

Tips and Tricks

  • Explain why they are getting a vaccination in words they understand. For example, “If you don’t get vaccinated you might get sick and miss your birthday party.”
  • Bring brave with you. A favorite superhero on a picture, a hat, a shirt, or a mask provides something to look at and makes them feel brave while they get their shot. If Grampa is their superhero, bring a picture of him!
  • Don’t lie. Be honest that this isn’t fun. Let them know you understand their feelings and reassure them that they are brave enough to get this accomplished.
  • Tell their doctor or nurse before the appointment that your loved one has a fear of needles and ask for ideas. Go in with a shared plan for how to calm, distract, or reward your brave one.
  • Ask if there’s a cream or spray to numb the injection site. If yes, use this information to explain why they probably won’t feel a thing.
  • Give them control. When do they want to go? Do they want company? Do they have any ideas about how to feel brave or how to earn a reward?
  • Practice breathing slow and easy and talk about how to use that breath anytime you are feeling afraid or anxious. You might mention that calm breathing reduces pain.
  • Bring a treat or preferred distraction for the waiting room: games, shows on the tablet, a favorite toy…or plan some new jokes.
  • If it’s better not to look at anything, help them close or cover their eyes. You can offer a hand to squeeze or something to hold or touch—like a favorite blanket, pillow or stuffed animal—to direct sensory attention away from the place where the needle goes in.
  • If they want you to stay during the injection, be calm yourself. Calm is contagious.

Resources and Related Information

  • Pediatricians build vaccination schedules for children at specific ages and stages to maximize their effectiveness. Waiting until later might harm your child.
  • The federal Centers for Disease Control and Prevention (CDC) has detailed recommendations for Child and Adolescent Immunizations, including a schedule.
  • If a person is allergic to eggs, gelatin, polyethylene glycol, or yeast, let a doctor know. Some vaccines include these ingredients. If you ask, there may be another option.
  • All CDC recommended vaccinations go through a rigorous Testing and the Approval Process.
  • If you have read, heard, or thought about something that makes you nervous, tell your doctor. Always ask where information comes from, and check to make sure the source is trustworthy.

Adolescent Health Care Act Provides Options for Families Seeking Mental Health and Substance Use Help for Young People Resistant to Treatment

A Brief Overview

  • The Adolescent Behavioral Health Care Access Act, passed into law by the Washington Legislature in 2019, gives parents and providers more leverage in treating a young person who will not or cannot independently seek medical help for a behavioral health condition.
  • The Washington State Health Care Authority (HCA) hosts website links with information about the law, which allows Family Initiated Treatment (FIT). The landing page includes an email address: hcafamilyinitiatedtreatment@hca.wa.gov.
  • Access to FIT is a topic of the state’s Children and Youth Behavioral Health Work Group. CYBHWG supports several sub-work groups, including one focused on school-based services and suicide prevention. Information about group membership, public meetings, resources, events and training is available on the HCA website.
  • If a person ages 15-40 is newly experiencing psychosis, Washington offers a wraparound-style program called New Journeys. This website link includes access to a referral form.

Full Article

Getting mental health help for a youth in crisis can be complicated, frustrating, and frightening.

Mental Health America ranks states based on the incidence of mental illness and access to services. The 2022 youth rankings list Washington 39th in the nation. Various measures indicate a high prevalence of major depression, substance use disorder, and/or emotional disturbance as a category of disability on the Individualized Education Program (IEP). Barriers to treatment consider insurance as well as availability of services.  

Sometimes a barrier to treatment involves a complicated balance of youth autonomy and parental responsibility. The most severe psychiatric conditions often include a symptom called anosognosia, which blocks the brain’s ability to see the impairment or understand why professional help could be of benefit. In youth whose brains are still forming, symptoms that impact insight and choice-making are particularly problematic.

New Journeys is an option when psychosis is present

Sometimes anosognosia co-occurs with psychosis, which indicates a person has lost touch with reality. Delusions and hallucinations may be present. If a person is newly experiencing psychosis, Washington offers a wraparound-style program called New Journeys: This link provides access to information for clients and families and includes an online referral form.

Causes of psychosis are the subject of ongoing research, but some theories suspect the brain is trying to make sense out of a world that does not make sense. Synapses fire errantly, and the brain tries to organize them into stories to calm itself. Synaptic loops get built during these firestorms of neural activity, and the stories that emerge become reality to the person whose brain is narrating the experience, even if they are untrue or grounded in false perceptions. Choice-making in the empirical world is often compromised.

Family education about psychosis is an aspect of New Journeys, which is for youth and adults ages 15-40 who have experienced psychotic symptoms for more than or equal to 1 week and less than or equal to 2 years. Staff from the University of the Washington contribute support to the state’s New Journeys program, which is offered in various but not all regions of the state.

University staff also support a program called Psychosis REACH, which provides evidence-based skill-building for relatives and friends of individuals with psychotic disorders. The practices are based in cognitive behavioral therapy (CBT). The program’s website includes information about training opportunities and resources.

Age of Consent in Washington is 13

In Washington State, the age of medical consent is 13. That means that a person 13-17 years old can independently seek medical treatment, without the consent or knowledge of parents.

Age of consent laws also have meant that Washington youth could say no to behavioral health treatment, regardless of whether parents and providers agreed that such treatment was necessary to protect the safety and well-being of the adolescent. Exceptions are made when there is a threat of imminent danger or grave disability due to psychiatric deterioration. Read on for more information about involuntary treatment/commitment.

The Adolescent Behavioral Health Care Access Act, passed by the Washington legislature in 2019, gives parents and providers more leverage when a young person is struggling with behavioral health and does not independently engage with treatment. The law allows parents/caregivers to bring a youth, ages 13-17, to a provider for evaluation without requiring consent from the youth.

The law includes elements introduced by the state Senate and House of Representatives, which originally titled the bill as HB 1874. In 2020, passage of HB 2883 added residential treatment as an additional option under Family Initiated Treatment (FIT).

The law does not limit an adolescent’s ability to initiate treatment on their own.

Parents have felt shut out of their teenager’s care

January 8, 2020, article in Crosscut profiles several families impacted by the new law. “Until the new law,” the article states, “parents often were shut out of their teenager’s care and treatment plans and couldn’t push a teen toward necessary outpatient or inpatient care without their consent.”

Passage of FIT marks a win for the Children and Youth Behavioral Health Work Group, which studied and reviewed recommendations from a stakeholder advisory group authorized by the 2018 legislature. Final language in the law was impacted by family members, youth, clinicians, hospital staff and many others who met dozens of times.

“Parent” is broadly defined, and information sharing is more open

Under the law, the definition of parent is expanded to include a wide range of family caregivers, guardians and others who have authority to initiate treatment. The Revised Code of Washington (RCW 9A.72.085) provides standards for “subscribing to an unsworn statement” that can apply to a caregiver initiating treatment. 

The law enables providers to share information with parents without an adolescent’s consent, if the provider determines that information sharing with family is in the best interests of the adolescent patient. A list of information-sharing guidelines is included below.

Note that parents retain the right to make medical decisions for children younger than 13, and adults 18 and older are responsible for medical decision-making if there is no guardianship.

In accordance with RCW 71.34.375, providers are required to provide notice to parents of all available treatment options, including Family Initiated Treatment. The state Health Care Authority provides a fact sheet to clarify those requirements.

Family-Initiated Treatment (FIT)

The FIT law allows a parent/caregiver to escort their adolescent child to certain licensed behavioral health facilities and request that a professional person examine the adolescent to determine whether treatment is medically necessary. That treatment might include outpatient, inpatient, or residential care.

According to the Health Care Authority (HCA), FIT is not a guarantee of immediate services, and no provider is obligated to provide services under FIT. Each provider has processes, procedures, and requirements pertaining to evaluation and admission to services. However, the only reason for not providing services cannot be the youth’s lack of consent (RCW 71.34.600).

If a facility covered by this law does not have a professional person available to perform the examination, the facility is not required to make staff available on demand. Additionally, if the professional determines the adolescent needs in-patient treatment but the facility does not have a bed available, the facility is not required to make a bed available. Included are those facilities that house children and youth under the Children’s Long-term Inpatient Program (CLIP). CLIP beds are generally subject to a waiting list and a multi-step referral process.

According to staff at Washington’s Health Care Authority, staffing shortages and other limitations within the behavioral health system have slowed implementation of the law. Families are encouraged to contact providers before taking an adolescent to a facility to determine if the provider has the capacity or ability to perform an assessment.

FIT in a community setting

If medical necessity is found by an outpatient provider who evaluates a young person brought into care through FIT, the provider is limited to 12 sessions over 3 months to attempt to work with the adolescent. If the young person still refuses to engage with treatment, then the period of Family-Initiated Treatment with that provider ends. The family at that point could seek treatment elsewhere.

State laws continue to encourage autonomy for young people, despite recognition that family involvement is important. According to the Revised Code of Washington (RCW 71.34.010):

 “Mental health and chemical dependency professionals shall guard against needless hospitalization and deprivations of liberty, enable treatment decisions to be made in response to clinical needs in accordance with sound professional judgment, and encourage the use of voluntary services. Mental health and chemical dependency professionals shall, whenever clinically appropriate, offer less restrictive alternatives to inpatient treatment. Additionally, all mental health care and treatment providers shall assure that minors’ parents are given an opportunity to participate in the treatment decisions for their minor children.”

For children and youth eligible for Apple Health, Wraparound with Intensive Services (WISe) is Washington’s most intensive outpatient treatment. PAVE provides an article: WISe Provides Team-Based Services for Washington Youth with Severe Behavioral Health Disorders.

The Health Care Authority (HCA) maintains a website page with information about WISe in multiple languages. Families can discuss their options for FIT with WISe staff and HCA leadership.

FIT in a hospital setting

An inpatient or residential facility can detain the adolescent under Family-Initiated Treatment (FIT) if medically necessary for a mental health condition. In these settings, FIT may last up to 30 days. Then the adolescent must be discharged, unless:

  • they agree to stay voluntarily, or
  • a designated crisis responder (DCR) initiates involuntary commitment proceedings

What is required for involuntary treatment?

The Involuntary Treatment Act (ITA) can apply to persons of any age who are determined to be gravely disabled or at imminent risk of harm to self, others, or property. Under Ricky’s Law, community members of any age who are a danger or gravely disabled due to a drug or alcohol problem may be involuntarily detained to a secure withdrawal management and stabilization facility—also known as secure detox.

For substance use disorder treatment, due to Federal Privacy Laws, a parent/caregiver can only provide consent for an assessment. The youth would have to consent to the results of the assessment being shared with their parent/caregiver and volunteer for ongoing treatment if it is deemed medically necessary.

Guidance for Information Sharing

Federal law, 42 CFR Part 2, restricts information sharing related to substance use, and clinicians cannot share that information without a patient’s written consent, regardless of whether the substance use co-occurs with mental illness.

Providers have discretion in determining what information about mental health diagnoses and treatment is clinically appropriate to share with parents of an adolescent 13-17. A provider retains discretion in withholding information from family/caregivers to protect an adolescent’s well-being. In general, however, the Adolescent Behavioral Healthcare Access Act encourages sharing information to support collaboration between the clinical setting and home. Specifically, providers and families are encouraged to discuss:

  • Diagnosis
  • Treatment Plan and Progress
  • Recommended medications, including risks, benefits, side effects, typical efficacy, dosages, and schedule
  • Education about the child’s mental health condition
  • Referrals to community resources
  • Coaching on parenting or behavioral management strategies
  • Crisis prevention planning and safety planning

To support family caregiving for individuals of all ages, the Washington State Hospital Association provides general guidance about exceptions to federal confidentiality laws (HIPAA): Permitted disclosures of mental health information and substance use disorder information without patient consent.

Family Support

For individualized, non-emergency support, please click Get Help and someone from PAVE will contact you. Family Voices of Washington, PAVE’s Family-to-Family Health Information Center, is another place for information and resources.

In addition to PAVE, here are places for family support:

  • COPE (Center of Parent Excellence) offers support group meetings and direct help from lead parent support specialists as part of a statewide program called A Common Voice.
  • Family, Youth, and System Partner Round Table (FYSPRT). Regional groups are a hub for family networking and emotional support. Some have distinct groups for young people.
  • Washington State Community Connectors (WSCC) sponsors an annual family training weekend, manages an SUD Family Navigator training, and offers ways for families to share their experiences and support one another. With passage of HB 1800 in 2022, WSCC is working with the Health Care Authority to build a statewide website (Parent Portal) to help families navigate behavioral health services.
  • Healthy Minds Healthy Futures is an informal network of family caregivers on Facebook. The group advocated for Family Initiated Treatment (FIT) and is part of the work to build the Parent Portal website.

Additional Resources

The  Health Care Authority (HCA) provides a range of information about behavioral health services for children and youth, including this downloadable resource: Parent’s Guide to Family Initiated Treatment.

Families can direct specific questions to: hcafamilyinitiatedtreatment@hca.wa.govPlease note that this business email is not intended for crisis response.

An agency called CaseText organizes links related to Family Initiated Treatment for direct access to various statutes.

Healthcare Transition and Medical Self-Advocacy

When young people turn 18, a lot happens. Adult responsibilities and decisions can feel scary and confusing for the unprepared. Becoming responsible for medical care is part of growing up, and that process is so critical that there’s a specific name for it: healthcare transition.

For example, at age 18 a young adult is responsible to sign official paperwork to authorize procedures or therapies. They must sign documents to say who can look at their medical records, talk to their doctors, or come to an appointment with them. Those rules are part of HIPAA, which stands for the Health Insurance Portability and Accountability Act. HIPAA is a federal law that protects confidentiality, regardless of disability.

In this video, young adults living with various disability and medical conditions talk about their journeys in the adult healthcare system. They talk about how they make decisions and how they ask for help. Their ability to explain their needs, make decisions, and speak up for themselves is called self-advocacy. Take a look and listen to what they have to say in their own words!

For more information and resources around healthcare transition and self-advocacy, follow these links to the Family to Family Health Information website.

Another place for information is the Informing Families website, which includes a section called got transition.

Long COVID May Cause Disability and Eligibility for Services

Some people infected by the SARS-CoV-2 virus experience long-term symptoms—called Long COVID. If lasting symptoms significantly impact a person’s life, their ability to work, or their access to school, disability laws are in place to protect and support them.

Among federal laws that support disability rights are the Americans with Disabilities Act (ADA), the Rehabilitation Act of 1973 (which includes Section 504), and the Individuals with Disabilities Education Act (IDEA). Note that Part B of the IDEA supports special education services for ages 3-21, and Part C provides early interventions for children birth-3.

Disability protections are also provided by Section 1557 of the Patient Protection and Affordable Care Act. The U.S. Department of Health and Human Services with the Civil Rights Division of the Department of Justice provide guidance on the HHS.gov website: Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557.

The federal Administration for Community Living (ACL) published a resource that is a place to begin learning about where support is available: How ACL’s Disability and Aging Networks Can Help People with Long COVID. For people whose work is impacted by Long COVID, the U.S. Department of Labor’s Office of Disability Employment Policy provides information related to job accommodations, employee benefits, worker’s rights, and more.

If a student with Long COVID is impacted, they can be evaluated to determine eligibility for school-based services. For students already identified for school-based services, Long COVID might entitle the student to additional or adjusted services. The Office of Special Education and Rehabilitation Services (OSERS), issued a Fact Sheet July 26, 2021, explaining the rights of children who may have a disability condition related to Long COVID. The rest of this article focuses on protections for children and students.

Section 504 support

Section 504 is part of the Rehabilitation Act and includes protections for individuals accessing a public space, service, or program. A person of any age with a disability has the right to accommodations and modifications if their disability condition significantly impacts a major life activity, such as breathing, walking, learning…. Section 504 guarantees equitable access to opportunities publicly available to people without disabilities. If COVID infection has caused a disability condition because of its lasting impacts, then Section 504 protections may apply.

In school, a Section 504 Plan provides a student with support in general education. Criteria are broad and determined if the student has a disability condition that impacts any aspect of their educational access. If so, the student is eligible for support to meet their needs.

For example, a student with Long COVID might have impacts to their breathing, walking, attention span, or stamina. They may need accommodations for a late start, a shortened school day, a reduced workload, or a place to rest while at school. If mental health is impacted, they may need social-emotional or behavioral supports to continue accessing their general education curriculum and class spaces.

School-based IEP services

If evaluation determines that Long COVID impacts a student (ages 3-21) to such a degree that special education and related services are necessary, then the student may be eligible for an Individualized Education Program (IEP). One eligibility category for IEP services, for example, is Other Health Impairment (OHI). For a full list of eligibility categories see PAVE’s article: IDEA: The Foundation of Special Education.

An educational evaluation determines:

  1. Is there a disability?
  2. Is there significant educational impact?
  3. Does the student require Specially Designed Instruction and/or Related Services?

If Long COVID has created a condition in which all three criteria are met, then the student receives services with an IEP. If the student already has an IEP and a COVID infection has created new barriers to learning, then a new evaluation may be needed to determine what additional services the IEP team can consider.

Here are a few examples of how Specially Designed Instruction (SDI) and Related Services might be included in an IEP to support a student with Long COVID:

  • A teacher provides instruction differently to support a student whose ability to focus is significantly impacted by Long COVID. Progress toward a skill of attention/focus is tracked to see if there is improvement or if something about the teaching strategy needs an adjustment.
  • A teacher helps a student learn emotional coping strategies after Long COVID caused severe anxiety and mood dysregulation. A goal is set to track progress on this social emotional learning (SEL) skill.
  • A physical education teacher provides a specially designed PE program for a student with Long COVID whose symptoms get worse with physical exertion. Goals are set, and progress is monitored. See PAVE’s article about Adapted PE.
  • A student with lingering physical symptoms of COVID receives physical or occupational therapy as a Related Services through the IEP.
  • A student with psychological impacts from the illness receives counseling as a Related Service on the IEP.

Of course, this is a short and incomplete list of possibilities. IEP teams are responsible to develop programming that is individualized to meet a student’s unique and specific needs. Evaluation data is critical in development of the services and programming, and families have the right to request an Independent Educational Evaluation (IEE) at district expense if they don’t believe the district’s own data is accurate or comprehensive enough to develop an appropriate IEP.

The primary entitlement of a student receiving school-based services is FAPE—Free Appropriate Public Education. FAPE means that services enable progress that is appropriate in light of the child’s circumstances. If Long COVID has disabled a student’s ability to access school appropriately, then they may be entitled to FAPE. The services that provide FAPE are determined individually and by a team that includes family participants.

Early intervention services

Health officials are reporting developmental delays related to COVID infections. Young children, Birth-3, who have been ill with COVID and have ongoing symptoms may be eligible for disability protections from the IDEA Part C, which provides federal funds for early intervention services delivered through an Individualized Family Service Plan (IFSP). According to the OSERS document about Long COVID:

“A child suspected of having a disability should be referred as soon as possible, but in no case more than seven days, after the child has been identified. With parental consent, a timely, comprehensive, multidisciplinary evaluation must be completed, and if the child is determined eligible, a child and family assessment must be conducted to determine the appropriate early intervention services and supports for the child and family.”

Resources to help you

PAVE provides resource collections to support families of children in various ages and stages:

PAVE’s Family-to-Family Health Information Center (F2F) provides direct assistance for questions related to health and wellness, insurance, and access to medical services. For questions about early intervention or school-based services, our Parent Training and Information (PTI) staff can help. Click Get Help from our home page at wapave.org to request individualized support.

Autism Spectrum Disorder: Information and Resources for Families

A Brief Overview

  • A short YouTube video by Osmosis.org provides an overview of Autism Spectrum Disorder (ASD).
  • A medical diagnosis of autism is not required for school-based evaluations or interventions. Read on for more information.
  • Families concerned about a child’s development can call the state’s Family Health Hotline at 1-800-322-2588. This toll-free number offers help in English, Spanish and other languages.
  • To encourage early screening for ASD, the Centers for Disease Control and Prevention (CDC) provides a 2-page tracking chart of developmental markers for children Birth-4.
  • The University of Washington Autism Center provides a collection of resources in categories that include online tools, early recognition, service organizations, and neurodiversity.
  • Information about early screening recommendations and state-specific guidance is available from the Washington Department of Health (DOH).
  • Help navigating medical systems is available from PAVE’s Family to Family Health Information Center. Fill out a Helpline Request for direct support or visit the Family Voices of Washington website for further information and resources.

Full Article

Parents of children with autism have many different experiences when watching for their baby’s first smile, their toddler’s first steps, emerging language, or their child’s learning in playtime or academic areas. When developmental milestones aren’t met in typical timeframes, families may seek a diagnosis, medical interventions, and/or supports from school.

April is Autism Acceptance Month, providing an opportunity to consider challenges and celebrations for individuals who experience neurodiversity, which is a word used to capture a range of differences in the ways that humans function and experience the world.

Self-advocates in the Autistic community celebrate diversity

Much of the Autistic community rallies to honor neurodiversity, uplift the voices of self-advocates, and forward the movement of civil and social rights. “Nothing About Us Without Us” is part of the disability rights movement supported by The Autistic Self Advocacy Network (ASAN), which shares resources by autistic individuals with lived experience for people who have autism spectrum disorders. ASAN created an e-book, And Straight on Till Morning: Essays on Autism Acceptance, as part of Autism Acceptance Month 2013. The agency also provides a welcome kit for newly diagnosed individuals: Welcome to the Autistic Community!

What is Autism Spectrum Disorder (ASD)?

Autism is referred to as a “spectrum” disorder, which means that signs and symptoms vary among individuals. The Centers for Disease Control and Prevention (CDC) defines Autism Spectrum Disorder (ASD) as “a developmental disability that can cause significant social, communication and behavioral challenges.

“There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.”

A diagnosis of ASD includes several conditions that were formerly diagnosed separately. Examples include autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. A short YouTube video by Osmosis.org provides an overview of ASD.

Signs and Symptoms

People with ASD may have problems with social, emotional, and communication skills. They might repeat certain behaviors or have rigid ideas about routines. Signs of ASD begin during early childhood and typically last throughout life. The CDC recommends that families seek early intervention if there are concerns about how a child plays, learns, speaks, acts, and moves.

Here are a few examples of some ASD symptoms:

  • Not pointing at objects, such as an airplane flying overhead, or looking when someone else points
  • Avoiding eye contact
  • Trouble understanding or expressing feelings
  • Not wanting to be held or cuddled
  • Repeating or echoing words, phrases, or actions
  • Not playing “pretend”
  • Unusual reactions to the way things smell, taste, look, feel, or sound

Diagnosing ASD can be difficult since there is no specific medical test. Doctors look at the person’s behavior and development to make a diagnosis. The CDC says a diagnosis from a credible professional by age 2 is considered very reliable.

How to seek a diagnosis

Medical diagnoses in Washington are provided by Autism Centers of Excellence (COEs). Many of these centers provide access to Applied Behavioral Analysis (ABA) therapy, an intervention that is helpful for some individuals with ASD.

An Autism COE may be a health care provider, medical practice, psychology practice, or multidisciplinary assessment team that has completed a certification training authorized by the state’s Health Care Authority (HCA). Physicians, nurse practitioners, and pediatric primary care naturopaths are eligible to apply for COE training and endorsement. The Developmental Disabilities Administration (DDA) accepts diagnoses from COEs as a component of DDA services eligibility, with the exception of naturopathic providers.

The American Academy of Pediatrics recommends that all children have a developmental screening at every well-child check-up, with an autism screening at 18 months of age and again between ages 2 and 3. To encourage early screening and intervention, the CDC provides a two-page tracking chart of developmental markers for children Birth-4.  Further information about these recommendations is available from the Washington Department of Health (DOH).

CDC numbers show that 1 in 88 children have ASD. According to Washington’s DOH, about 10,000 of the state’s children have ASD. An Autism Task Force has been at work since 2005 to promote early screening and intervention. In collaboration with DOH and other agencies, the task force in July 2016 published the downloadable Autism Guidebook for Washington State.

The guidebook includes information for families, care providers, educators, medical professionals, and others. It includes an extensive Autism Lifespan Resource Directory. Diagnostic criteria and special education eligibility criteria are described, as are specifically recommended interventions.

Getting help at school

Autism is an eligibility category for a student to receive school-based services through an Individualized Education Program (IEP). The categories are defined by the federal Individuals with Disabilities Education Act (IDEA). State law further defines the categories and criteria for intervention.

The Washington Administrative Code that describes IEP eligibility (WAC 392-172A-01035) describes autism as “a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a student’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.”

Regardless of whether a student is medically diagnosed with ASD, a school district has the affirmative duty to seek out, evaluate and serve—if eligible—any child within its boundaries who has a known or suspected disability condition that may significantly impact access to learning (Child Find Mandate). Child Find applies to IDEA’s Part B IEP services for children ages 3-21 and to IDEA’s Part C early intervention services for children Birth-3.

Families concerned about a child’s development can call the state’s Family Health Hotline at 1-800-322-2588. This toll-free number offers help in English, Spanish and other languages.

Schools have specific evaluation tools to determine how the features of an autistic disorder might impact school. Evaluations can also determine eligibility based on health impairments (for example, ADHD), speech delays, learning disabilities, or emotional behavioral conditions that might co-occur with autism. See PAVE’s article about evaluation process for more information, including a list of all IDEA eligibility categories.

In short, a student is eligible for an Individualized Education Program (IEP) if the evaluation determines:

  1. The student has a disability
  2. The disability significantly impacts access to education
  3. The student requires Specially Designed Instruction (SDI) and/or Related Services

Not every student with ASD is eligible for school-based services through an IEP. Some may have “major life activity” impacts to qualify for a Section 504 Plan, which can accommodate a student within general education.

Section 504 provides anti-discrimination protections as part of the Rehabilitation Act of 1973. Keep in mind that students with IEPs have disability-related protections from IDEA and Section 504. Additional protections are part of the Americans with Disabilities Act (ADA). See PAVE’s article about disability history for additional information.

Resources related to ASD

Resources for families, teachers, and medical providers supporting individuals with autism are vast. The University of Washington Autism Center provides a manageable place to begin with a small collection of resource categories that include online tools, early recognition, organization, and neurodiversity. Within its online tools, UW maintains lists of organizations that provide advocacy, assessments, intervention services, and research/training.

Families whose children experience autism may need services beyond school. Speech, Occupational Therapy, Applied Behavioral Analysis (ABA) therapies, and other services may be available through insurance if they are determined to be medically necessary.

PAVE’s Family-to-Family Health Information Center (Family Voices of WA) provides support to families navigating various healthcare systems related to disability. Fill out a Helpline Request for direct support or visit the Family Voices of Washington website for further information and resources.

The state Health Care Authority provides information about ABA resources and how to seek approval from public insurance (Apple Health) for specific therapies. HCA also hosts a list of Contracted ABA providers in Washington State

Another place to seek help with questions related to medical and/or insurance services is the Washington Autism Alliance (WAA). WAA provides free support for families navigating insurance and medical systems and can help with DDA applications. WAA’s website requests families to join the agency by providing basic information before they navigate to request an intake. Note that while basic services are free from WAA, the agency may charge a fee based on a sliding scale if families request legal services from an attorney.

WAA is sponsoring a virtual Day Out for Autism April 24, 2021, with family-friendly Facebook Live events starting at 10 am.