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.

Telling Your Story with a Purpose: How to Inspire Action in Two Minutes

Every person’s story has the potential to impact how others think or act. Disability rights have been legislated because of individuals who spoke up and sparked change. This video introduces a strategy for telling a potent story in two or fewer minutes, using your own hand to guide the process. Think of this as a hand model for an inspirational elevator speech to improve or inspire:

  • Self-advocacy
  • Public comment
  • A meeting with public officials
  • Legislative forums or candidate meetings
  • Community education

 The Arc of Washington State provides pathways for people to participate in legislative advocacy. The Arc serves people with intellectual and developmental disabilities of all ages and their families. 

Some staff members at PAVE are certified to teach Telling your Story with a Purpose, a training created by the state’s Department of Health and Seattle Children’s Hospital. For support to create your story, fill out a PAVE Helpline request, and a trained staff member will contact you.

Questions to consider first:

  1. What is the challenge or problem that you, your child or your family faces? Think of a problem that also affects other people and families. Consider writing one sentence about people in general and one sentence about your own story, child, or family. 
  2. How does this challenge affect others?
  3. How might this challenge affect others if nothing changes?
  4. What needs to change?
  5. What can be done to improve the situation?
  6. Who has the power to make a change? 

Key information for your story:

  1. Who are you?  Be sure to say your name and the district, city, or town you live in.
  2. If you want to include information about other people be sure you have permission before sharing anything confidential, such as names, ages, or health information.
  3. Clearly and simply describe the problem or challenge.
  4. Explain why this is important.
  5. Include a short story (4-5 sentences) about how this issue has affected you and your family. If possible, use a positive example – a situation where things went well and why you want others to have a similar experience.
  6. What do you want your listener to do? State your request in one sentence with 30 or fewer words. Avoid a general request for “support.” Provide a clear action:
    • “I ask you to vote for…”
    • “I want you to change this policy in order to…”
    • “I want you to fund a program that…” 
  7. Stop and check: Consider if your comments might make the listener feel criticized or attacked. Focus on the solution. Make sure you’ve included statements about how others in the community can benefit.
  8. End by restating your request and saying thank you. When possible, thank the listener for something they have done in the past that you appreciate–voting for a bill, serving on a committee, funding a program. 

Children’s Long-Term Inpatient Program (CLIP) Provides Residential Psychiatric Treatment

A Brief Overview

  • CLIP serves children ages 5-18 by providing residential mental-health treatment for a long-term stay that usually lasts 6-12 months. Read on for more information about CLIP eligibility and how to initiate a referral.
  • Governor Jay Inslee in December recommended $675 million in new funding for behavioral health improvements statewide, and policymakers are working on a variety of bills during the 2019 legislative session. Families can contact lawmakers to participate in advocacy.
  • The state has a Stakeholder Advisory Group discussing issues related to Parent-Initiated Treatment. A group of engaged parents participates in a conversation on a Facebook page called Support SB 5706.
  • Studies show that 1 in 5 children will suffer from mental illness. PAVE has additional articles and webinars about mental health education in school, suicide and Social Emotional Learning.

Full Article

Families have few options to help a child with a psychiatric illness that makes in-home, community-based care unworkable. Local hospitals are designed to provide crisis care and generally do not keep a patient for mental health treatment and recovery beyond a few days or weeks. Sometimes those short hospitalizations are not long enough to offer true stability that allows a child to return to school and life with successful outcomes.

One choice is to apply for the Children’s Long-Term Inpatient Program (CLIP), a state program that manages 89 beds in five locations throughout Washington. Most CLIP referrals are for children with Medicaid—public health insurance. Families with private health insurance have access to CLIP but may be referred first to private facilities for long-term, inpatient care. Medicaid is the payer of last resort.

Who is Eligible for CLIP?

  • Youth ages 5 to 18
  • Legal residents of Washington State
  • Youth diagnosed with a severe psychiatric disorder
  • Youth possessing a risk to themselves or others
  • Youth who warrant care under the supervision of a psychiatrist because of grave disability due to psychiatric illness
  • Youth who are not successfully treated through community-based mental health resources

CLIP serves children ages 5-18 by providing residential mental-health treatment for a long-term stay that usually lasts 6-12 months. Please note that eligibility for CLIP ends on the child’s 18th birthday.

Parents/legal guardians engage with the treatment team while the child is at the CLIP facility. The goal is to help the child stabilize and provide the family with the tools needed for a successful return to the home, school and community. Children attend school while at CLIP, and teachers manage any Individualized Education Program (IEP) or Section 504 plan that travels with the student from the local district.

Parents and legal guardians can refer children to CLIP by applying through one of the regional committees positioned throughout the state. Contact information for regional committee leadership is available through the CLIP website. The regional committee meets with the family to discuss the case and determine whether to refer the case to the CLIP Administration for review. The state committee then determines whether to approve the case for CLIP. Sometimes a child is put on a waiting list for an available bed.

Please note that families need an organized set of medical and school paperwork to complete CLIP applications. Refer to PAVE’s article about document management for guidance about how to create a care notebook or other filing system for this and other purposes.

The regional CLIP committee includes care providers from managed care organizations and other agencies that may provide additional support and resources to the family, regardless of whether a CLIP referral is recommended. Generally, the committee determines that all community-care options have been exhausted before recommending a more restrictive placement through CLIP. The team will also make a recommendation based on whether the child is likely to benefit from the therapeutic program, which is mental-health based and may not be a good fit for an individual with a severe form of developmental or intellectual disability.

The largest CLIP facility is the Child Study and Treatment Center (CSTC) in Lakewood, adjacent to Western State Hospital. CSTC provides 47 beds in cottages that house children in groups by age. Additional options include:

  • Burien, Sunstone Youth Treatment Center: 10 beds
  • Tacoma, The Pearl Street Center: 12 beds
  • Spokane, the Tamarack Center: 16 beds
  • Yakima, Two Rivers Landing: 4 CLIP beds in a facility with 16 total youth beds

Parents can initiate a referral, but children over Washington’s Age of Consent (13) must volunteer to go to a CLIP facility unless a county Designated Crisis Responder (DCR) determines the child meets the state’s criteria for a 180-day commitment under the Involuntary Treatment Act (ITA). Any persons over the age of 13 in Washington must be imminently threatening to harm themselves or others or be severely gravely disabled, in a state of extreme psychiatric deterioration, to receive an ITA admission to any inpatient facility.

Wording from Washington’s gravely disabled statute is as follows: “Manifests severe deterioration in routine functioning evidenced by repeated and escalating loss of cognitive or volitional control over his or her actions and is not receiving such care as is essential for his or her health or safety.”

State lawmakers are engaged in work to consider changes to the ITA law, and families are invited to contact policymakers if they have thoughts or concerns to share about this initiative or other activities related to treatment access, Age of Consent laws or Parent-Initiated Treatment. Governor Jay Inslee in December recommended $675 million in new funding for behavioral health improvements statewide.

CLIP is funded with state and federal dollars. A child’s Medicaid case manager through a Managed Care Organization (Molina, Community Health Plan of Washington, Coordinated Care, Amerigroup or United Healthcare) can provide guidance about CLIP applications. Families also can request further information from a care management team through the Wraparound with Intensive Services (WISe) program, which provides outpatient care coordination for children with intensive psychiatric needs in various Washington communities. A CLIP referral often happens because WISe was unable to help the child stabilize in the home.

WISe is managed through the state’s Health Care Authority, and HCA is another source for information about various options for mental healthcare for Medicaid-eligible children, youth and families. Families can reach out to the HCA for further information.