Stay Stubborn! One Girl’s Self-Determination while Navigating Healthcare

By Kyann Flint

Being stubborn is the right approach when it means self-determination. Having the drive to learn what you want and need and then speak up for yourself gives you control over your life. 

I learned that lesson young. By age 6, I was advocating in my own healthcare. My doctor wanted to stick a swab up my nose and down my throat at the same time. I told him, “No!” and asked, “What would that accomplish?” I was not sick. Why put me through that? I had been through enough tests. If this one was not going to improve my pain or give me a diagnosis, then it did not need to happen. Because I spoke up, it didn’t!

My parents supported my growing self-advocacy and also advocated for me. As my voice blossomed, so did my skills for self-determination. The self-determination skills I worked on throughout childhood have helped me gain independence and make some of the most important adult decisions of my life.

When I was 8, I was diagnosed with a type of genetic peripheral neuropathy called Charcot Marie Tooth (CMT). The coating around my nerves becomes scarred and cannot be repaired, making it hard for my brain to tell my legs, arms, feet, and hands what to do.

I continued to have symptoms that did not quite fit this diagnosis, so testing continued. By age 12, I started asking whether further diagnoses would improve my quality of life. The answer was no, so I chose to end the poking and prodding and deal with my symptoms as they came.

Right after I turned 21, I was in tremendous pain and needed more help. Three years later, I had a second diagnosis: Heredity Spastic Paraplegia. Four years after that, the cause of my pain was finally found. My bladder was failing, which made it difficult to go to the bathroom. I eventually lost the ability to go to the bathroom on my own. On September 30, 2020, I made one of the best decisions of my life and had the Mitrofanoff surgery that now allows me to go to the bathroom independently.

I needed a lot of self-determination to get to this point. Before the surgery, one doctor advised against it, explaining that I wasn’t a good candidate due to my progressive neuromuscular disorders. She predicted that I would be incapacitated one day, so “why bother?” I decided that even if she were right, I wanted the independence that the surgery could provide now. I found a new surgeon. I am so thankful that I did!

My surgeon related well with me and supported my belief that I was “worthy” of this procedure. He agreed that it was a good choice to enable me to live more independently right now. The choice to proceed wasn’t easy or pain-free. I needed many tests and procedures, including a colonoscopy without anesthesia. Delays in scheduling the surgery tested my self-determination, but I persevered.

My surgery included a week in the hospital and months of recovery, but my stubborn nature helped me get through it all, despite the frustration of having limited manual dexterity and being legally blind. But I figured out how to go to the bathroom independently!

It took a lot of self-determination to move forward with one of the best decisions of my life, but I am proud that I made this decision. If you have a decision to make in your life, I hope you will tap into your own stubborn self-determination. Figure out what you need and want and speak up for yourself. I’m so glad I did.

About the author: Kyann Flint, Director of Accessibility for Wandke Consulting, is a passionate advocate for the disability community. As a person with a disability, she strives to educate society on how social barriers, like ignorance and stereotypes, limit the disability community. Kyann loves coffee and traveling.

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 mental illness and/or substance use disorder.
  • The Washington State Health Care Authority (HCA) hosts website links with information about the new law, which allows Family Initiated Treatment (FIT). The landing page includes an email address: hcafamilyinitiatedtreatment@hca.wa.gov.
  • Enactment of FIT is a project 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 group membership, public meetings, resources, events and training is available through a dedicated HCA website page.
  • A place to connect with other families concerned about these topics is a Facebook group called Youth Behavioral Healthcare Advocates (YBHA-WA).
  • 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 2021 youth rankings list Washington 35th 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.  

The 2021 indicators show Washington has risen since 2020, when the youth ranking was 43rd nationally. However, overall statistics are dire, indicating the COVID-19 pandemic has worsened mental healthcare conditions and treatment access across all age groups and states. “Youth mental health is worsening,” the data shows. “Even in states with the greatest access, over 38 percent are not receiving the mental health services they need. Among youth with severe depression, only 27.3 percent received consistent treatment.”

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.

UW 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, the COVID-19 pandemic and capacity limitations within the behavioral health system have hindered many providers from fully developing processes to implement 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 with Medicaid, the Wraparound with Intensive Services (WISe) program is Washington’s most intensive option for outpatient care. 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 leadership at HCA.

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

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 beinvoluntary 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.

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.gov. Please 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.

Holiday Survival Tips For Families with Special Healthcare Needs

Holidays provide a mix of social situations and emotions, and the COVID-19 pandemic adds elements that look a little different for every family. This article provides ideas for celebrating and finding points of joy, with specific tips for those impacted by special healthcare needs.

Here are the quick takeaway topics:

  • Break the routine: Although travel or a gathering with extended family might not be possible, take a break from everyday routines to share moments that feel special.
  • Plan and save surprises too: Mix up the activities so the children can help with some planning but there are also surprises.
  • Wise men staying afar? Get creative to create social contact through media and other means.
  • Handle with care: If you travel, make a careful plan for health and safety.
  • Families need a village: Asking for help from those who also care for your child can strengthen the ability to cope and enjoy the season.
  • Gratitude keeps giving: Moments of thankfulness calm the mind.

Read on for more detail!

Break the routine, but keep the comfort

Families have been home a lot in 2020, so staying home during the holiday might feel like more of the same. Seek ways to add sparkle to the holidays by doing some things the family does not always have time for: cooking or baking together, singing, story time by the fireplace, games, checking for signs of Santa or sending notes to the North Pole or other special places.

WestEd.org, a California-based nonprofit committed to equity for learners of all ages, provides a guidebook with practical support for family caregivers during stay-at-home orders. Caring for Young Children While Sheltering in Place provides quick links to activity videos (story-based yoga, for example, with winter and holiday themes), easy-to-learn songs, arts-and-crafts, sensory play, cooking with kids, and much more. Choosing a couple of developmentally appropriate ideas for each special day might add just the right amount of sparkle to a holiday staycation!

Some families struggle to keep children nestled all snug in their beds in any season. Maintaining a sleep schedule can certainly minimize challenging behaviors. However, if appropriate, a “Holiday” sleep schedule with an extra hour of special family time before bed might add a fun flavor of flexibility for some families. 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.”

Silver bells, strings of streetlights and some of the holiday hustle is still happening. Drive through light shows and virtual celebrations for Christmas, Hanukkah, and Kwanzaa are popping up online. One tradition that has always been virtual is the NORAD Santa tracker, which keeps tabs on Santa’s business 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 a few suggested themes:

  • How I celebrated when I was a kid
  • Christmas 1820, 1720, 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 participate, 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.

Wise men staying afar?

If the household is staying isolated from family and friends to slow the spread of COVID-19, getting socially connected might require a bit of creativity. Of course, video teleconferencing or video phone calls are options. Letters and cards can be sent and received by mail, email, text, video…

Someone might drop by to deliver a singing telegram from a safe distance. Special messages can get written on front windows or shared by signs placed strategically inside or outside where someone will look. In-the-car parades or celebration drive-by events work for some people, while others can meet safely in outdoor spaces.

Consider who needs to connect, what messages need to be shared, and how to make the contact meaningful, whatever the format.

Handle with Care

For families choosing to travel, bags with medication and equipment need to include plenty of masks, hand sanitizer and sanitizing wipes. Plan extra supplies to accommodate unexpected delays and follow health and safety guidance related to the COVID-19 crisis.

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: customerservice@portseattle.org. The phone number for the Spokane Airport Administrative Offices: (509) 455-6455. Amtrak provides a range of Accessible Travel Services.

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 sugarplums 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. As always, ask for support from family, friends, doctors, and therapists—perhaps virtually—to reinforce positive messages and realistic expectations. Saying no can be nice, so choose what works and toss the guilt if the family needs to pass on a tradition or an invitation.

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. A caregiver is always stronger when that oxygen mask is well secured!

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 five tips to practice gratitude during the holidays, including this one: Make a list of things you have instead of things you want. 

Families experiencing loss or grief may need more outside support. The Dougy Center, Stoney Brook, and New Hope Grief provide resources to help children and families manage loss and grief.

“Remembering the person who died is part of the healing process,” the Dougy Center site advises. “One way to remember is simply to talk about the person who died. It’s okay to use his/her name and to share what you remember. You might say, ‘Your dad really liked this song,’ or ‘Your mom was the best pie maker I know.’”

Talking openly about the loss might add an important element to a family’s unique and heart-felt holiday.

Help for Understanding Health Insurance

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

Technology Provides Options for Medical Care from a Distance

A Brief Overview

  • During the coronavirus pandemic and statewide stay-home orders, some providers are offering online appointments. This article includes information about access to telehealth and how to prepare for a virtual visit.
  • Federal privacy laws have been relaxed during the shutdown to allow more opportunities for on-screen healthcare. Washington’s telemedicine parity law was updated by the 2015 legislature. Those updates went into effect in 2017 (SSB 5175).
  • Generally, military families with TRICARE and families with state insurance, Apple Health, have coverage for medically necessary services provided through telemedicine.
  • A 6-minute video tutorial from the Hawaii Department of Health provides information about what to expect during a telehealth session.
  • Washington’s Department of Social and Health Services (DSHS) is providing free cell phones and minutes to low-income families through a federal program called Lifeline. State-specific information about this option is available from the Health Care Authority.
  • See Links to Support Families during the Coronavirus Crisis for additional resources.

Full Article

Families staying home during the coronavirus pandemic need new ways to access medical care. Onscreen appointments—telehealth, telemedicine, teleintervention, telepsychiatry—meet some needs.

The U.S. Department of Health and Human Services (hhs.gov) in early March 2020 relaxed legal requirements related to confidentiality in order to support the delivery of telehealth services while families shelter in place. Roger Severino, director of the Office for Civil Rights (OCR), issued the following statement: “We are empowering medical providers to serve patients wherever they are during this national public health emergency. We are especially concerned about reaching those most at risk, including older persons and persons with disabilities.”

The federal guidance refers to confidentiality rules under the Health Insurance Portability and Accountability Act of 1996 (HIPAA). The HHS website states that OCR will use discretion and relax compliance under HIPAA if services are delivered in good faith:

“During the COVID-19 national emergency, which also constitutes a nationwide public health emergency, covered health care providers subject to the HIPAA Rules may seek to communicate with patients, and provide telehealth services, through remote communications technologies.  Some of these technologies, and the manner in which they are used by HIPAA-covered health care providers, may not fully comply with the requirements of the HIPAA Rules.”

Washington State has grown telehealth since 2015

Even before social distancing requirements, virtual appointments for diagnoses and treatments that don’t require direct physical examination have gained popularity. Before COVID-19 took hold, Washington’s 2020 legislature passed HB 2728 to support further development of children’s behavioral health services delivered through telemedicine.

In order to meet needs in some rural communities and underserved fields, such as psychiatry, Washington’s telemedicine parity law was updated by the 2015 legislature. Those updates went into effect in 2017 (SSB 5175).

The law enables providers to seek reimbursement for most services provided virtually if those same services would be covered by insurance if they were delivered in person. The law defines telemedicine as “the delivery of health care services through the use of interactive audio and video technology, permitting real-time communication between the patient at the originating site and the provider, for the purpose of diagnosis, consultation, or treatment.”

Telephone (“audio only”) services or provider guidance by facsimile (FAX) or email may not be covered. Families can check with their insurance carrier to make sure an appointment would be covered if video could fail during the appointment or is unavailable because of a technology complication.

Generally, telemedicine is covered by insurance if:

  • The payor would cover the service if it was provided in-person, and the service can reasonably be provided without direct contact.
  • The health care service is medically necessary.
  • The service is recognized as an essential health benefit under the federal Patient Protection and Affordable Care Act

Individual providers create their own policies about whether they provide services electronically, and the parity law doesn’t guarantee equal reimbursement. Washington is part of the Interstate Medical Licensure Compact, making it easier for providers to get licensed in multiple states and provide services to a broader clientele, including through telemedicine.

Families with Medicaid in Washington State, which is called Apple Health, can find information related to telehealth from the Health Care Authority. In keeping with federal guidance, Medicaid in general is reimbursing telehealth services at the same rate they would reimburse in-person services during the pandemic.

TRICARE expands options for military families, including ABA

TRICARE provides coverage for medically necessary telemedicine visits from providers who offer that service. Preventive health screenings, psychiatric care and medication consultations are examples of appointments that are most easily held virtually. Depending on the TRICARE plan, an authorization or referral may be needed.

In addition, TRICARE is extending telehealth for families who access Applied Behavior Analysis (ABA) and are enrolled in the Autism Care Demonstration (ACD) March 31- May 31, 2020. This temporary extension includes ABA support to parents/caregivers, and the services don’t require the child to be present at the telehealth appointment.

How do I prepare for a telemedicine appointment?

Before services are rendered, providers are required to seek informed consent from patients and/or legal guardians and to provide information about how the technology works and how privacy is protected. Electronic signatures are generally acceptable, particularly as the state requires social distancing. The Washington State Department of Social and Health Services (DSHS) provides a downloadable guidebook about telehealth

Prepare for a routine check-up like you would if you were visiting the clinic: Write down questions and concerns, including any changes related to health or medication. A visual tutorial, created by the Department of Health in Hawaii, walks through the different types of telehealth and what someone might expect.

If you suspect COVID-19, carefully document symptoms. The Centers for Disease Control (CDC) provide a COVID-19 screening tool. Be sure to note anything about the illness or its possible treatment that might be affected by a disability condition.

If testing is prescribed, a drive-through testing site may be suggested. The Americans with Disabilities Act (ADA) affords individuals the right to accommodations when accessing what is publicly available. The Northwest ADA Center provides guidance about drive-through testing, specifically addressing topics related to blindness, deafness or wheelchair access, for example. Prepare for the telehealth appointment with any questions related to drive-through testing and disability, if that topic might come up.

What if I don’t have internet or a cell phone?

Families who do not have internet at home may be able to get service for free or low cost because of the pandemic. Some internet providers offer free internet for a limited time, based on income. Internet Essentials from Comcast and Charter Communications are examples. Their services are based on income, and students with free and reduced lunches are among those who may qualify.

Washington’s  Department of Social and Health Services (DSHS) is providing free cell phones and minutes to low-income families through a federal program called Lifeline. State-specific information about this option is available from the Health Care Authority.

How can I plan for an in-person doctor visit or emergency?

Children with complex medical needs may still need an in-person doctor visit for some conditions. General guidance is to call ahead if there is concern that anyone in the family might be ill so medical staff can take precautions to protect everyone from exposure to illness. In many locations, individuals are screened and checked for fever before they enter the facility.

For a medical emergency, prepare to offer first-responders clear information about the nature of the emergency. If a member of your household has a chronic condition that may create an urgent care situation, prepare a handout with basic information in advance. PAVE’s article about a Care Notebook might help. Because personal protective equipment (masks, gloves, gowns) are in short supply, responders will send minimal staff for less urgent circumstances. If the situation is clearly life or death, a larger team may suit up with personal protective equipment in order to help.

Many dental offices have closed, although some may remain open for emergency procedures. Call ahead: Schedules and policies are changing rapidly.

Caregivers of children with complex needs face additional challenges

Being the caregiver for a child with significant medical needs adds additional layers to current circumstances. Here are questions some will face:

  • Is my child’s medical need worth the risk of exposure to a hospital setting?
  • What are the short-term and long-term considerations in changing the plan for care during this time of national crisis?

The answers obviously are personal and different for every family’s circumstances.

While facing tough choices and uncertain times, your self-care is critical, and PAVE offers an article with ideas just for you. Of course, start with the basics: breathe with intention, nourish your body and seek points of fun and connection each day. Staying connected to a child’s care team can help, so you’re already in touch if there’s an emergent medical situation.

PAVE’s Family-to-Family Health Information Center continues to provide information for families and caregivers of children with disabilities and special healthcare needs in Washington State. Fill out a Helpline Request Form at wapave.org for individualized assistance.

Relatives Raising Children Face Unique Challenges

Imagine a knock on the front door at night. Outside is a police officer, bringing a child to the safe-haven of a grandparent’s home. A grandparent might experience fear and confusion, trying to reconcile what has happened in the family and how to support the child. This is how a journey toward kinship care can begin.

May is Kinship Awareness Month, an opportunity to acknowledge relatives other than parents raising children. Nearly 50,000 family members in Washington are kinship caregivers. Many of the children in their care have experienced trauma and need special education or uniquely designed physical- or mental-health services.

Relatives who provide kinship care can qualify for state support. The Washington State Department of Social and Health Services (DSHS) provides a resource guide about kinship care that includes information about benefits and services, health care, legal issues and more. DSHS manages the kinship program as part of its Aging and Long-Term Support Administration (ALTSA).

Reasons that relatives other than parents raise children vary. Some family members are granted custody by courts involved in the child welfare system. In other circumstances, law enforcement places children with relatives after finding parents unfit. Parents may have died, or a relative may have intervened because of issues related to addiction or abuse. Some kinship caregivers are meeting a grandchild, niece, or nephew for the first time when that child needs a new home.

A child might arrive without any possessions. The financial cost and life disruption can significantly impact the relative providing kinship care. In Washington, the Kinship Navigator program can help. This program was adopted by the state in 2003.  

A Kinship Navigator can direct family caregivers to a variety of community resources related to healthcare, finances, legal services, support groups, training, child care and emergency funds. Kinship Navigators also can explain how to apply for federal and state benefits. The Kinship Navigator helps families establish or maintain greater self-sufficiency and long-term stability, often with a goal to keep children out of foster care.

A navigator can help family caregivers get involved with support groups and learn to balance the needs of the child with a potentially complicated relationship with the child’s parents. Daycare options can be located, and children might gain access to recreational and social activities to help them find belonging in a new life circumstance.

In spring 2019, Governor Jay Inslee signed into law Senate Bill 5641 to create a statewide kinship care legal aid coordinator. The state budget was expanded to include $500,000 for growth of the Kinship Care Support Program and $468,000 to fund Tribal Navigators for Native American families. One of the bill’s supporters was Rep. Eric Pettigrew, who in 2002 helped create a statewide Kinship Care Oversight Committee that led to development of the state’s kinship programming.

The Seattle Times published an article Dec. 28, 2018, about kinship care and reimbursement rates in comparison to foster care. According to the Times, about 43,000 relatives other than parents are raising children in Washington State. More than 90 percent of those caregivers are grandparents. The article includes data that most families choose not to become legal foster parents because of state scrutiny over the welfare system. Informal kinship-care arrangements are four times more common than formal foster care.

Generations United, a Washington, D.C.-based nonprofit, collects data about government costs and savings related to kinship care. The agency coordinates projects to strengthen intergenerational connections and offers ways for families to advocate for system improvements to benefit children, youth and older adults.

The Military Parent Technical Assistance Center, The Branch, provides specific guidance about benefits and other issues that impact short- and long-term kinship caregivers in military families.

Stay Cool when Summer Heats Up

Summertime brings special challenges for families whose children have special needs. Some medical conditions and medications make individuals particularly susceptible to the heat. Be sure to check with your doctor about which medications might increase heat sensitivity.

Keep in mind that extreme heat combined with humidity can make a person even more vulnerable. It’s harder for the body to sweat and cool itself off when the humidity rises, making it even harder to maintain a healthy body temperature.

The US Department of Homeland Security manages a website, Ready.gov, to help people prepare for and mitigate emergencies, including a variety of natural and man-made disasters. The website offers articles translated into a variety of languages. The campaign provides these bits of advice related to the risks of extremely hot weather:

  • Extreme heat can occur quickly and without warning.
  • Older adults, children, and sick or overweight individuals are at greater risk from extreme heat.
  • Humidity increases the feeling of heat as measured by a heat index.

Here are a few ideas for your family when the heat is on:

  • Stay indoors and in an air-conditioned environment as much as possible unless you know your body has a high tolerance for heat.
  • Drink plenty of fluids but avoid beverages that contain alcohol, caffeine or a lot of sugar.
  • Eat more frequently, but make sure meals are balanced and light.
  • Never leave any person or pet in a parked vehicle.
  • Avoid dressing babies in heavy clothing or wrapping them in warm blankets.
  • Check frequently on people who are elderly, ill or may need help. If you might need help, arrange to have family, friends or neighbors check in with you at least twice a day throughout warm weather periods.
  • Make sure pets have plenty of water.
  • Salt tablets should only be taken if specified by your doctor. If you are on a salt-restrictive diet, check with a doctor before increasing salt intake.
  • If you take prescription diuretics, antihistamines, mood-altering or antispasmodic drugs, check with a doctor about the effects of sun and heat exposure.
  • Cover windows that receive morning or afternoon sun. Awnings and window coverings can reduce the heat entering a house by as much as 80 percent.

If you go outside:

  • Plan strenuous outdoor activities for early or late in the day, when temperatures are cooler.
  • Take frequent breaks when working outdoors.
  • Wear a wide-brimmed hat, sun block and light-colored, loose-fitting clothes when outdoors.
  • At first signs of heat illness (dizziness, nausea, headaches, muscle cramps), move to a cooler location, rest for a few minutes and slowly drink a cool beverage. Seek medical attention immediately if you do not feel better.
  • Avoid sunburn, which slows the skin’s ability to cool itself. Use a sunscreen lotion with a high SPF (sun protection factor) rating.
  • Avoid extreme temperature changes. A cool shower immediately after coming in from hot temperatures can result in hypothermia, particularly for elderly or very young people.

If the power goes out or air conditioning is not available

  • If air conditioning is not available, stay on the lowest floor out of the sunshine.
  • Ask your doctor about any prescription medicine you keep refrigerated. (If the power goes out, most medicine will be fine to leave in a closed refrigerator for at least 3 hours.)
  • Keep a few bottles of water in your freezer; if the power goes out, move them to your refrigerator and keep the doors shut.

The Washington State Department of Health lists additional ideas through its website. Some Extreme Heat Cooling Centers in Washington State are listed through the state’s 211 Information Network.

Supplemental Security Income (SSI)

WHAT IS SSI?

SSI is a monthly financial benefit from the Social Security Administration to people with limited income and resources who are age 65 or older, blind or disabled.  Blind or disabled children, as well as adults, can get SSI.

In most states, SSI determination is required for Medicaid eligibility of children with disabilities.

ELIGIBILITY REQUIREMENTS:

  • Financial Determination
  • Parental income is deemed, counted then prorated among the family members
  • Exclusions
  • Income includes Earned and Unearned Income
  • Parental Resources are counted
  • Disability Determination

Specific requirements:

Marked and severe functional limitations as defined by the Social Security Administration the limitations must have lasted or are supposed to last for a continuous period of 12 months or longer

The decision is made by a State Agency, Disability Determination Service, specifically,  a team composed of a disability examiner and a medical or psychological consultant

What does the Social Security Administration Need?

  • Social Security Card for all children
  • Proof of Age—Birth Certificate for all children
  • Citizenship—Birth Certificate
  • Proof of Income—3 months LES
  • Earned-wages and special pays
  • Unearned Income-BAH/quarters and BAS

Proof of Resources:

  • Bank statements
  • Deed or tax appraisal
  • Insurance Policies
  • Certificates of Deposit, Stocks and Bonds

Proof of Living Arrangements:

  • Deed, tax bill, or lease receipt
  • Medical Assistance Cards
  • Information about household costs, (utilities)

Medical Sources of Information:

  • Medical Reports stating disability
  • Names, addresses and telephone numbers of doctors and other medical service providers
  • Names and Documentation on how disability affects the day-to-day activities.

How To Apply?

Go to local Social Security Office, ideally in the middle of month for faster service

Call the SSA office at 1-800-772-1213

While stationed overseas and you think your child may be eligible for SSI, you can apply by contacting the Federal Benefits Unit at the following Embassies or Consulates:

Germany Federal Benefits Unit
American Consulate General
Giessener Str. 30
60435 Frankfurt, Germany
Phone: 49-69-7535-2496
Fax:  49-69-749-352

England Federal Benefits Unit
American Embassy
24/31 Grosvenor Square
W1AW 2LQ London, England
Phone: 44-207-499-9000
Fax: 44-207-495-7200

Japan American Embassy
Federal Benefits Unit
1-10-5 Akasaka
Minato-ku, Tokyo
107-8420 Japan
Phone: 81-3-3224-5000
Fax: 81-3-3505-1862

Korea Social Security Division
Veterans Affairs
Regional Office
American Embassy
1131 Roxas Boulevard
0930 Manila, Philippines
Phone: 63-522-4716 or 63-2-526-5936
Fax:  632-522-1514

Things to Remember

  • It can take up to 180 days for approval.
  • Payments are retroactive to the date of application.  Your initial contact may be considered the date of contact.
  • 1 of every 5 applications are denied—APPEAL.*
  • When talking about the disability discuss the worst days, not the best.
  • It is necessary to complete both disability and financial determinations when assessing eligibility. This is because SSI eligibility determination may be used in other programs within your state.
  • Establishing the disability eligibility will enable your child to receive SSI when they turn 18 and the parent’s income is no longer considered, or if their economic situation changes.
  • *Tip: Appeals to decisions are common and a right for your child
  • Special Consideration for military families OCONUS
  • Continuation of SSI benefits for families who PCS CONUS to OCONUS who meet the following criteria:
  • Was eligible to receive SSI in the month before parent reported for duty overseas—payments will continue from the state you last were eligible

Report information regarding:

  • Moves of the child
  • People move into or out of the home
  • Changes of financial status
  • Leaving the Armed Forces and remaining overseas

For more information visit the SSI web page

“Working Together with Military Families of Individuals with DisAbilities!”