Self-Advocacy Report: A Summary of Activities and Discussion from the July 2022 Meeting of the Washington State Developmental Disabilities Council

Leigh Spruce, Self-Advocacy Coordinator at The Arc of Snohomish County, serves on the Washington State Developmental Disabilities Council (DDC). She was appointed to membership on the DDC by Governor Jay Inslee in 2021.

The role of DDC is to plan, implement and monitor the State Plan that exists to improve supports and services for individuals living with developmental disabilities and their families. The Council’s mission is to advocate, promote and implement policies and practices to create pathways to meaningful, integrated and productive lives for people with intellectual and developmental disabilities (I/DD) over the life course.

DDC meets on a quarterly basis. Leigh Spruce shares a report each quarter following the statewide meeting. Below is her report on the July 2022 DDC membership meeting.

The Washington State Developmental Disabilities Council met [in July 2022] to interview the final 3 candidates who were being considered for the [DDC] Executive Director position. They were interviewed separately. They were asked about their knowledge of the I/DD community, as well as past experience and life experience with this community as it relates to public policy with state government. Each candidate gave a short presentation on what the I/DD community meant to them. After the interviews, we had a discussion about what we thought of each one. We were able to decide who we liked the best of the three candidates and voted. The candidate will be notified at a later date.

We broke off into working groups to examine what needs to be updated with the criteria regarding DDC and its role pertaining to various meetings and public policy, as well as membership and needed supports for the meetings.

[DDC Policy Director] Adrienne Stuart will be stepping down in her role with the DDC at the end of the month [July 2022]. She gave a final summary on the North Star legislative project

 and hopes that the work that has been done will continue. She was pleased to share that because of it, there were important bills [last legislative session] which supported the I/DD community. We were able to lend our voices to getting some things passed through the legislature.

Since the July 2022 meeting, the DDC announced the hiring of their new executive director Brandi Monts, who brings with her to this position her 23 years of experience working in residential services, employment, government, teaching, advocacy and consulting. Read more about Brandi Monts and her new role at the helm of DDC at tinyurl.com/2us4cdn3.

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Leigh Spruce is a Self-Advocacy Coordinator at The Arc of Snohomish County. In this role she supports engagement activities and leadership and advocacy training for adults with disabilities in Snohomish County and across the Puget Sound region. She serves on numerous community boards and committees and is an engaged activist for disability rights. Contact: leigh@arcsno.org.

Point of View: The Hospital Hangover

The “hospital hangover.”

It’s totally a thing.

If you are a parent or family medical-caregiver, you know it is a thing.

It is the day after you get home from a hospitalization with your child. You wake up with all the tell-tale signs of a long night out, minus the good stories and, of course, lacking the after-glow of a well-deserved evening of fun with friends.

You feel like you were hit by a bus... or a train… or maybe even two trains, depending on the exact particulars of the recent stay.

You are tired and groggy. Your joints ache and your movements bear an awfully closely resemblance to a snail trekking through a mountain of pudding. Your memory is fuzzy, and you keep forgetting the day of the week. Greasy, comfort food sounds delightfully tasty.

You look around, and your house is an absolute disaster. There are piles of unwashed clothes strewn across the room. Unpacked duffels sit next to garbage bags filled to overflow with random boxes of half-used rubber gloves and syringe singles. Sure, it might feel like an extremely odd hangover, but a hangover nonetheless.

It is a unique type of hangover.

It is the hospital hangover.

It lasts a day, maybe two; possibly the whole weekend following an admission.

You may even experience a surprise hospital hangover the morning after a day-surgery or even a particularly long afternoon of back-to-back clinics. (I am convinced that those surprise hangovers are correlated directly to the stress of surgery and/or marathon appointments. The absence of an overnight stay does not necessarily detract from the hallmark brain-fog of the morning-after experience.)

I shared once on my family’s Instagram account @rollin.w.spinabifida about my personal struggle-bus with the hospital hangover. I knew it had to be a thing and was quickly validated in that belief by dozens of messages from other parent caregivers. My fellow medical moms and dads jumped into my DMs with their shared experience of that dreaded hangover.

Moral of the story: If you are a parent or family caregiver who wakes up the morning after a hospital discharge wondering if a large pine tree may have dislodged itself from the ground in the middle of the night and crashed right through the roof of your home to land squarely on top of you while you slept (probably not soundly) in bed… you are sooo not alone in that feeling.

You are among friends here in the world of disability and medically-complex parenting.

And, like any other hangover, the miracle “cure” is unique to the individual.

What works for me?

A slow morning-after with A LOT of coffee. I need time to re-acclimate. To breathe deeply. Even if the hospitalization was a single night, a single night is all it takes to ignite all the symptoms of a raging, migraine-inducing hangover. I desperately need those morning hours to reset my headspace.

I ignore the mess. Yes, there are bags to unpack. There is a pile of hospital laundry to wash. There are medical supplies and equipment to put away. I am behind on work. My house needs to be cleaned. There is more “stuff” loaded in the back seat of our family car. Whatever…. That is a problem for an undefined “later” part of the day.

I take a walk, and then another. A long, morning walk with a very large mug of hot coffee is usually the first “task” on my post-hospitalization to-do list. The sunshine and fresh air helps me refocus my mind and clarify my thoughts. It gets my body back up and moving in accordance with the rhythms of our regular home life. Often, the first day after a hospital stay is marked by several walks — a long morning march, a lunchtime stroll around the block, and another long afternoon dawdle.

I spend the evening reclaiming my mental space. After bedtime on that first full day home, I unroll my yoga mat and spend time stretching, focusing, breathing. I apply a thick facemask and take a long, steaming shower. Then, I indulge in several of my go-to snack options and binge-watch old episodes of a favorite TV show. Simply, decompressing is the goal.

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Whitney Stohr is the Leadership & Independent Living Program Manager at The Arc of Snohomish County. She is passionate about advocating for medically complex children and children with disabilities and their families. She is especially interested in caregiving policy and advocacy. She is a mom and medical caregiver herself, who is energized by working closely with other parent and family caregivers. She lives with her spouse and their four-year-old son Malachi in Lynnwood. Connect with her on Instagram @rollin.w.spinabifida. Contact: whitney@arcsno.org.

READ-ALOUD: Ribbit!

A group of frogs are living happily in a peaceful pond, until they discover a surprise visitor: a little, pink pig. Sitting contentedly on a rock in the middle of their pond, the pig opens his mouth and says: RIBBIT! The frogs are bewildered at first, and then a bit annoyed — “What did that little pig just say?” “Does he think he’s a frog?” “Is he making fun of us?”

Soon the pig draws the attention of all the nearby animals; everyone is curious to know what he wants! After much guessing (and shouting) and a visit to the wise old beetle, the animals realize that perhaps the pig was not there to mock them after all — maybe he just wanted to make new friends! But is it too late?

This is a warm, funny and beautifully illustrated story of friendship. (Read more at https://tinyurl.com/33wy3tur.)

Join Whitney Stohr, Leadership & Independent Living Program Manager at The Arc of Snohomish County, as she reads: Ribbit!, by author Rodrigo Folgueira and illustrator Poly Bernatene (published 2013 by Knopf Books for Young Readers).

Le importazioni di farmaci illegali in Svizzera sono aumentate del 40% sur ce site. Questo contenuto è stato pubblicato il 23 febbraio 2022Il 23 febbraio 2022 sono state sequestrate in Svizzera 9.421 confezioni di farmaci importati illegalmente nel 2021.

How to Engage in Advocacy During the 2022 August Congressional Recess

Each year, our national legislators in Congress recess for the month of August. They take this time away from Congress to return to their home states and, often, use the time to meet with constituents, attend events or participate in Town Hall meetings. This mid-year recess is an opportunity for advocates to engage their legislators and share their views, concerns and perspectives. (Click here to learn more about the annual August Recess.)

The Arc of the United States recently shared a document with ideas and methods for engaging with elected legislators. Here are some ideas.

Check the website of your members of Congress to see what options they have to connect with constituents this month. You may find in-person or virtual options. [Click here to identify your members of Congress.]

Connect on Twitter! Snap a picture, post it on social media with a sentence or two about what you are advocating for, and tag your members of Congress. You can find a list of Congressional Twitter handles here: https://tinyurl.com/4fk8r6ae.

Join town hall meetings hosted by your representatives and senators, encourage advocates to join, and ask questions about issues that are important to the disability community. You can find upcoming town hall meetings at townhallproject.com.

Say thank you. Have your members of Congress recently supported legislation that is important to you? Thank them! Write an email, send a letter, or snap a picture to share on social media, tagging them in your thank you message.

Connect with The Arc to join an in-person or virtual meeting with your legislators. Introduce yourself and talk about issues that are important to you and your family. [The Arc of Snohomish County can help connect you. Email us!]

Draft an email to share your story and important issues with your legislators. You can also share your story and tag your legislators on social media.

Learn more about policy issues of Federal importance on The Arc U.S. website at thearc.org/policy-advocacy.

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Whitney Stohr is the Leadership & Independent Living Program Manager at The Arc of Snohomish County. She is passionate about advocating for medically complex children and children with disabilities and their families. She is especially interested in caregiving policy and advocacy. She is a mom and medical caregiver herself, who is energized by working closely with other parent and family caregivers. She lives with her spouse and their four-year-old son Malachi in Lynnwood. Connect with her on Instagram @rollin.w.spinabifida. Contact: whitney@arcsno.org.