Find The Arc on Instagram!!

The Arc of Snohomish County has a new Instagram page!

Find us at the handle @ArcSnohomishLeads.

As the page name suggests, our goal with this new account is to highlight and share news and updates on leadership development opportunities, as well as current advocacy efforts, programs and projects. We look forward to celebrating the community involvement and leadership of our staff members, many of whom play an incremental role in policy change and legislative advocacy at the local, county, state and national level through their connections with The Arc and other disability focused organizations.

We also want to use this page to celebrate YOU! We want to highlight all of the ways that you and your family are involved in local leadership and advocacy. Whether it is at your child’s school, an after-school program, a local nonprofit organization, self-advocacy groups, a state-wide legislative coalition, or anything in between — we want to share it!

If you have a leadership or advocacy story to share, contact Whitney Stohr, Leadership & Independent Living Program Manager, at whitney@arcsno.org.

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.

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.

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.

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.

Local Disability Rights Advocates Attend New Arc Leadership Workshop on July 23rd

The Arc of Snohomish County welcomed a dozen local disability rights advocates at a leadership training event on Saturday, July 23rd, 2022. Event trainees included parents and caregivers of children with developmental disabilities, adult self-advocates with intellectual and developmental disabilities, and leaders working professionally in the field.

The Leadership & Advocacy Workshop launched a new biannual training program that The Arc hopes will further support and engage new and emerging voices leading the disability rights movement in Snohomish County and across the state.

The workshop was developed and facilitated by Rachel Kube, The Arc’s Advocacy & Communications Coordinator, with support from other Arc staff members, who contributed presentations on leadership, advocacy, coalition-building, goal-setting and effective communication.

During the event, trainees discussed what it means to be a leader, leadership qualities and skills, and different types of leadership styles. They learned about legislative advocacy and the policymaking process, how to engage in legislative advocacy, and what it means to advocate at the local, county and state levels. Trainees talked about disability policies and issues that are important to them and in which they hope to engage further as leaders and advocates.

[Pictured: A word cloud created together by trainees listing the strengths and qualities they value in leadership.]

The biggest take-away lessons from the July 23rd training:

We are all leaders! Every single one of us has what it takes to lead, to advocate, to engage and to speak out on issues and policies that matter.

There are different ways to lead! We can be a leader within our families, our neighborhood or our faith community. We can engage in local leadership, in our city or county, by joining workgroups or sitting on local boards or commissions. We can be a parent leader at our child’s school or PTA group. We can support a nonprofit organization, either as a board member, a donor, or an event volunteer or fundraiser. There are countless ways to serve and countless ways to lead.

Are you interested in leadership?

Are you interested in learning more about advocacy?

If so, contact The Arc of Snohomish County, by email, at Whitney@arcsno.org, or by phone, at (425) 258-2459 x102, to share your leadership and advocacy interests and discuss possible opportunities to get involved.

Our self-paced, virtual Arc Leadership Training curriculum is available to those interested in learning more about the history of the disability rights movement, current policies and areas in which advocates can get involved to create positive change. Contact Rachel@arcsno.org to learn more.

We also offer training opportunities for self-advocates. Virtual workshops for self-advocates are scheduled for Thursday, August 4th, 2022, 1-3 PM, and Thursday, August 11th, 2022, 6-8 PM. Contact jessie@arcsno.org for more information. Adult self-advocates can also contact Leigh Spruce at leigh@arcsno.org to discuss their leadership goals.

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https://www.linkedin.com/in/whitneystohr/“>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 a mom and medical caregiver herself, who is energized by working closely with other parent/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: The Lucky Blue Angel

Lucky McGuire is a spirited Navy jet with big dreams. Lucky loves to fly and be with his friends. Lucky dreams of becoming a Blue Angel, but does not know where his next adventure will take him. Will it be flying in the skies with his buddies, or will he be sent to the dreaded aircraft storage yard in the desert?

Find out what is in store for Lucky as he chases his dreams!

(Click here to read more)

Join Whitney Stohr, Leadership & Independent Living Program Manager at The Arc of Snohomish County, as she reads: The Lucky Blue Angel, written by author Robert Flynn and illustrated by Kevin Coffey (published 2011 by Mascot Books, Inc.).

Then, next month, from Friday, August 5th, through Sunday, August 7th, 2022, turn your eyes to the skies in Seattle for a real-life appearance of Blue Angel jets as they razzle and dazzle at the Seafair Air Show. It is quite the performance!

Originally founded in 1950, the annual nonprofit festival Seafair has brought exciting events and family fun to the Seattle area. With events spanning a total of ten weeks throughout the summer, over two million people participate in Seafair activities each year. The festival currently supports seven Signature events, including Seafair Summer 4th, Milk Carton Derby, Seafair Triathlon & Kids Triathlon, the Torchlight Parade, Fleet Week and the Seafair Weekend Festival. Additionally, the festival promotes over 25 related community events. Visit seafair.org for more information.

Advocacy Spotlight: Laura Akers

Laura Akers is a self-advocate from Everett who manages multiple jobs while advocating for herself and others.

“I keep busy. I have three jobs. I’ve been working at Lumen Field since 2015, Angel of the Winds Arena since 2018, and just started at Climate Pledge Arena in October 2021. I work at guest services, as a ticket-taker, or as an usher, depending on the day. I’m able to make my own schedule, so I’m able choose when and where I work. It takes a lot of planning, though. I have to ride the light rail and multiple buses to get to work, so I have to make sure I have plenty of time to get there.”

Laura was able to find these employment opportunities on her own and used her job coach to help her apply to each one.

“I found the Lumen Field job online and my job coach helped me with the application. I heard about the Angel of the Winds job through word of mouth, and Climate Pledge was also online. My job coach helped me with all the applications, but I arrange everything myself now.”

Laura’s work experience has helped with her own self-advocacy, helping her advocate for herself, and in doing so, helping her advocate for others.

“I advocate for myself and others with accessibility. I need a chair for certain things and making sure I have that is advocacy. Now, I advocate for accessibility for others. I advocate to make sure medical equipment is accessible and make sure everyone can participate.”

Beyond her personal advocacy, Laura is also actively involved in local groups for self-advocates, including People First of Snohomish County and The Arc’s Women’s Group.

“I have a lot of ideas that I’m always suggesting. I have lot of staycation ideas.”

In March of 2022, Laura began serving on the Citizens Accessibility Advisory Committee for Sound Transit.

“It was really important to me to get on that board. They really wanted somebody with disabilities to speak about accessibility for the light rail expansion. They don’t think about location a lot, and I can tell them a location won’t work because of traffic. Like, they wanted a stop on Casino Road [in Everett], and I told them that is a very dangerous place to cross and, hopefully, they’ll be moving it.”

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Originally published in The Arc of Snohomish County: Leadership Collective Newsletter, Issue 2 – 2022. Written by Jake Murray, Parent/Family Coalition Coordinator.

Self-Advocacy Report: A Focus on Accessible Transportation

On May 25th, 2022, the United States Department of Transportation (DOT) hosted an online listening session to discuss transportation issues around the country and what plans are being put forward to address them. The ultimate goal of the DOT is to find where the most services are needed and address those issues in alignment with President Biden’s goal to promote and ensure equity.

One of the goals discussed was to grant more funding to smaller, underserved communities to support small businesses, bringing them to various communities, as well as creating ways for people to get to them. This will give everyone who is underserved in their communities a chance to participate equally. DOT Secretary Pete Buttigieg stated: “Everyone is deserving [of equity] in their lives,” and that equal access, particularly to transit, helps change lives.

Secretary Buttigieg continued to discuss how the original intent of public transportation was to be equal and how it needs to work to provide equal access to everyone for connection to work, medical care, and life, in general.

Deputy Secretary of Transportation Polly Trottenberg spoke specifically about supporting [the Americans with Disabilities Act] and that $22 billion would allow for more accessibility with emphasis on building safer streets. This would include easier sidewalk access, accessible transit stations, and better access to Amtrak and other rail solutions.

Due to a higher cost of living in a lot of areas, more people are moving from metropolitan regions to more rural locations. Discussions have focused on increasing paratransit access to rural areas to help with the influx of more people to these communities. Secretary Buttigieg has discussed increasing funding by up to 44% for rural paratransit expansion. This would greatly help rural areas by creating more inclusion and providing affordable transportation options to more people in more areas.

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Originally published in The Arc of Snohomish County: Leadership Collective Newsletter, Issue 2 – 2022.

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 Spruce at leigh@arcsno.org.

JUST RELEASED: Leadership Collective Newsletter — Spring 2022

The Arc of Snohomish County published the Spring 2022 e-newsletter — recently re-branded as the “LEADERSHIP COLLECTIVE” quarterly publication — on July 5th.

The Leadership Collective shares stories of leadership and advocacy, as well as upcoming events and educational opportunities for parents and family caregivers, self-advocates, professionals and disability rights activists and allies. The publication focuses on disability visibility, advocacy, leadership and knowledge.

This most recent edition is Issue 2 of the 2022 newsletter series. It features an “Advocacy Spotlight” article on Laura Akers, a local self-advocate and Arc Trained Leader. The newsletter also includes information about a variety of upcoming leadership and advocacy training opportunities.

View the complete newsletter at http://tiny.cc/2022leadershipNewsletter2.

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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 a mom and medical caregiver herself, who is energized by working closely with other parent/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.