ACCESSIBLE Community Transit Transportation by Leigh Spruce

Community Transit is working to improve accessibility for all in Snohomish county. I am currently participating in a number of ongoing working groups that are looking into developing more centralized forms of transit systems around the areas where there is population growth and who have underserved access to transportation in these communities.

Light rail is coming to Lynnwood and then Everett within the next 2-5 years, which will make getting to and from much easier and more efficient.

Community Transit has been working with another group to implement a shuttle system (Zip Shuttle) to help getting around Lynnwood much easier and more efficiently. What is great about this is that it is an on demand ride service that works very much like Uber/Lyft with the GOIN’ phone app.  The cost will be considerably less: $2.50 per ride, $1.25 if you have an Orca card, and free for those under 18 yrs. old.  It will run from 5am to 10 pm, seven days a week, circulating mainly in the downtown Lynnwood area from Alderwood Mall to the Edmonds Library.  There will be options for an accessible van or car and requesting a car seat for a young child or baby.

Community Transit is conducting a study for the next year to see if this is successful. There are already plans to study other areas within Snohomish County, like Lake Stevens, Arlington and Darrington to see if such programs will work in these areas, although the type of service may vary.

The next city that is looking to improve transportation services is Arlington. Community Transit is working on a survey to see where this type of service will benefit most. At a recent meeting, we met to get an introduction on the project, and we looked at past surveys that were conducted in Lynnwood. We customized the survey and narrowed down some criteria, to customize ideas relating to the needs in Arlington. We hope to distribute the survey in the next few weeks.

For more information, you can call 425-521-5600, or you can download the GOIN’ app on your android or Apple device.

*****Leigh Spruce is the Self-Advocate Coordinator for The Arc of Snohomish County.  Contact her at leigh@arcsno.org or 425-258-2459 ext. 103 for information about transportation, housing, leadership, and self-advocacy.

Supporting (and Paying) Parent Caregivers

Anyone who has a waiver with DDA knows there is a shortage of in-home caregivers.  Parents whose children are on DDA waivers with respite and personal care hours are not receiving care to fulfill those hours.  As a result, parents are doing most if not all of the personal care.  Without revealing too much personal information in order to protect his dignity, my son with Down syndrome is 9 years old and still requires a caregiver to take care of his personal needs.  A nondisabled 9 year old can independently take care of his personal hygiene, dress himself, and get into bed consistently on his own.  A nondisabled 9 year old understands not to turn on the cooking appliances or touch the fireplace guards.  A nondisabled 9 year old does not run out into the street or parking lot in disregard of danger.  These are personal care concerns for which my son needs attention.  His DDA plan allows for about 40 hours per month for which he does have an outside caregiver.  However, even these hours do not cover all of his personal care needs.  My husband and I, his parents, do the rest.  His needs require one of us (or a trained caregiver) to be within sight at all times.  He cannot attend a before or after school daycare because they will not support him.  As a result, we need to have work schedules where at least one of us is home in the morning and the other after school and bedtime.  Sometimes it takes both of us to support him. 

House Bill (HB) 1694 aims to address the home care worker shortage in Washington state and, among other things, directs DSHS to begin a cost and feasibility study for parents to become the paid caregivers of their children under age 18 who are medically complex or have intellectual or developmental disabilities.  Whitney Stohr is the mother of a 5 year old named Malachi who is medically complex, uses a trach, and experiences epilepsy and spina bifida.  She recently testified in support of HB 1694 in a public hearing.  She explained to legislators that she has two main roles in her son’s life:  a nurturing and loving parent and a nursing caregiver.  Taking care of a medically complex child is so much more than a parent delivering the occasional first aid to a child.  Malachi requires daily if not hourly medical support which required Whitney to resign from her job and put her career on hold.  Malachi’s father, Whitney’s husband, is able to work but works mainly from home so he can assist.  Malachi’s parents cannot be considered paid caregivers because Malachi is under that age of 18.  Parents of children 18 and older can be compensated as caregivers under the current law.  

Whitney has been very involved in advocating for parents to be paid caregivers.  In her words:  “My passion project in disability/caregiving policy is around caregiver pay. I believe that all family caregivers should be compensated for the care work they do. Care work is a job, and family caregivers deserve the recognition, pay and benefits that come along with employment. I am one of the Leads of an informal coalition of parent/family caregivers, called Washington For All Families Coalition, which supports the development of a legislative or regulatory pathway by which parent-caregivers of children with disabilities under age 18 can become contracted (and thus paid) providers through the state….Other states do pay parent-caregivers to care for their medically complex children. This issue is trending, and the conversation around caregiver pay is not going away.” 

Engrossed second substitute HB 1694 passed the House of Representatives and is currently in the Senate.  If it passes the legislature, the new law would remove some of the barriers for paid caregiver recertification.  There would be more flexibility in paid caregiver testing requirements.  Close family members could be paid caregivers with only doing half of the required training. The cost and feasibility study is a small step in the direction of allowing parents to be paid caregivers for their children of any age who are medically complex or have intellectual and developmental disabilities.  A few other states, such as California, do pay parents as caregivers.  I look forward to seeing this study and will continue to advocate on this issue to my legislators.

Take the opportunity to register your position and comment on this bill.  

Read more about this issue by The Arc of Washington State.

**Courtney Criss is the Leadership and Advocacy Manager at The Arc of Snohomish County.  She is also a wife and mother of four children, two of which have Down syndrome.  She was born and raised in the Seattle area and dreams of an inclusive society for all.  Opinions expressed in this article are her own and are not attributed to The Arc of Snohomish County.

How My First Capitol Rally Encouraged Me to Be Active in Legislative Advocacy

By Courtney Criss, Leadership and Advocacy Manager

At the time I was born, it was not uncommon (and might have been very common) for doctors to recommend that parents place their baby or young child with an intellectual or developmental disability (IDD) in an institution.  I don’t doubt they loved their children and probably visited as often as they could.  There were few alternatives at the time to institutionalization, with little to no resources and assistance to raise children with IDD in the family home.  Children of this generation did not receive in-home therapies like mine do.  They did not have the right to a public education before the Individuals with Disabilities Education Act (IDEA) of 1975, which allowed all children to attend school and introduced the Individualized Education Program (IEP).  There was no respite care or personal care in the home.  The Division of Rehabilitation Vocational services (DVR), which provides training, job coaches, and job placements, was more aimed towards physical disabilities. The Americans with Disabilities Act (ADA) was not even passed until 1990.

I am not familiar with how institutions or Rehabilitation Housing Centers (RHCs) treat and care for individuals with IDD.  I have not researched it on my own.  I have heard what self-advocates have said about their experiences living in institutions.  A self-advocate named Mike reported to King 5 that they treated him like a dog.  Another self-advocate named Ivonova Smith told the crowd at the Rally on January 25th that she could not have married and had children if she was still in an institution.  

I believe the concept of institutionalization came from the ableist and eugenicist attitudes of the 19th and 20th centuries. It came from harmful ideas about what people with IDD can and cannot do, how and where people with IDD should live, and how people with IDD should interact with the larger community.  Since their inception, institutions have had a documented history of violence, abuse, and neglect. When the community is not involved and privacy reigns, abuse can flourish.  Just like today, when children are 100% kept in special education classrooms away from general education kids and teachers, abuse including restraint and isolation can occur.  It is much less likely to occur when a student with IDD is educated alongside his general education peers and included in the general education environment.  If an individual with IDD is not living in an institutional setting but in the community, abuse may still occur but it is logical to think it would be less with more exposure to and more participation in the community.  With proper education and communication devices if needed, individuals can express themselves and report abuse much easier than they could if living in an institution.

Today, there are 500 individuals with IDD living in state institutions in Washington.  This is a relatively low number compared to the number of individuals with IDD living in Washington.    

I had never been to a rally before I went to the Supported Living rally on Wednesday, January 25th in Olympia. So when self-advocates and the advisor for People First were organizing a day trip to Olympia, I made sure I could join.  I’ve heard it has been difficult to engage folks in advocacy and general activities as we are coming out of the pandemic.  Only 5 of us drove to Olympia.  It was kind of a last minute idea to go so we did not have appointments with any legislators.  I was surprised at how open the capitol building is;  I had expected x-ray machines and bag searches.  The rally was held outside on the capitol steps.  Ivanova Smith was the M.C. She introduced a variety of speakers from state representatives and senators to self-advocates to caregivers and interspersed with leading chants of “What do we want?- Community living!  When do we want it?- Now!”  

As a mother of young children with Down syndrome (they are 3 and 9), I am still learning about the IDD community and past history.  At least three speakers with IDD who have lived in institutions shared their experiences of before and after.  They spoke of the freedom they have now to go shopping, attend church and sporting events, hang out with friends, date significant others, and eat what they want.  These are activities and choices that people without disabilities take for granted.  People with disabilities can live and thrive in the community with proper supports including communication devices, wheelchairs, caregivers, nurses, and home and community based services.

Unfortunately, there are no immediate plans to close Rainier, Fircrest, or the other two DSHS institutions in Washington State.  Before institutions can close, the 500 individuals currently residing in them will first need to be transitioned to supported living in the community.  There are a few proposed bills this session to bolster supported living for people with IDD. Two of these proposed bills in this legislative session can further the goal of closing institutions and providing housing in the community. HB1265/SB5302 proposes a property tax exemption for nonprofit adult family homes that serve people with IDD.  HB1654/SB5506  proposes the creation of “enhanced behavior support homes” for individuals with IDD who have higher support needs.  These homes are designed to be in the community and have no more than 4 individuals in each home with 24 hour supervision.  At present, there is no timeline to close the institutions and it is not clear if they will ever be closed.

If you want to comment on these or any bill, you can click a button on the right of “Bill Status-at-a-Glance” called “Comment on this bill.”  The Comment button will lead you to a page where you enter your name, address, and whether you support or oppose (or are neutral) about this bill.  You can also enter in comments up to 5000 words!      

The Arc of Washington State hosts a Zoom session every Wednesday at 10am about this year’s proposed bills.  Advocacy Days are organized by topic.  Feb. 15 and 22nd are about housing.  April 5th will also focus specifically on RHCs.  These sessions are recorded so you can watch past sessions.  You can register here:  Advocacy Days – Washington State (arcwa.org).  

I have to admit that legislative advocacy was overwhelming to me before I started working at The Arc.  The Arc of Washington’s website organizes the information well.  The Arc of Snohomish County can also explain bills to you.  If you have any questions about proposed bills and how you can voice your concerns or opinions, please contact us:  Jake@arcsno.org, Rachel@arcsno.org or myself, Courtney@arcsno.org.  

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Courtney Criss is the Leadership and Advocacy Manager at The Arc of Snohomish County.  She is also a wife and mother of four children, two of which have Down syndrome.  She was born and raised in the Seattle area and dreams of an inclusive society for all.  Opinions expressed in this article are her own and are not attributed to The Arc of Snohomish County.

Guardianship & Alternatives

Recently the guardianship laws in Washington state changed.  As of the beginning of 2022, there are now two types of protective arrangements:  guardianship of the person and conservatorship of the estate.  Guardianship controls the life decisions of the individual with disabilities and conservatorship controls the financial decisions.  

Guardianship in effect takes away an individual’s rights so the Court is careful to allow guardianship of what is needed to keep that individual safe.  A guardian could be awarded decision making ability for medical treatment for the individual.  The guardian can sign consent forms for treatment and has access to medical information under HIPAA.  The guardian could have control over the individuals’ right to vote, marry, or choose a place to live.

The parent does not always have to be the guardian.  A parent could petition for guardianship to protect the parent’s adult child but then ask another person or organization to have the guardianship.  An adult sibling or a trusted friend could be the guardian

How are caregivers in Snohomish County of adult individuals finding what works best for them?  Here are stories of three parent caregivers in our community who have adult children with intellectual/developmental disabilities.  Names have been changed to protect their privacy.

Mary

Mary is the mother of an adult with autism who lives in supported housing.  She believed from a young age that her daughter would need full guardianship and she wanted to be her guardian.  She started the process a few months before her daughter’s 18th birthday.  She was able to file the papers without an attorney (pro se) with a friend’s help.  “My daughter’s guardian at litum [now called ‘court visitor’] was wonderful;  she came to our home.  There was no need to be concerned.  And she helped us understand the next steps.  She was also there in courtroom.”   

Mary now uses a lawyer to keep track of Court dates and reports.  She is required to report to the Court every three years.  The last report was 2021 before the reporting rules changed.  She has been educating herself about the new requirements and has the reporting forms ready to go.  She feels prepared for next reporting year.  She is confident in her record keeping skills:  keeps every receipt and staples them to her monthly statements  For example, when Mary buys clothing for her daughter, she keeps the receipt and files right away.  Her advice is to not let the paperwork build up.  Mary is also her daughter’s representative payee for SSI.  Her daughter has an Arc endowment trust which sends quarterly updates and a few disbursements come out of that.  The Court wants to see a plan of care and financial plan but the questions are still basic.   

Sarah

Sarah is the mother of a young man with autism who lives with her.  He works a few days a week getting there by riding his bike or the dart bus.  In his spare time, he makes detailed travel plans for him and his family.

A few years ago, Sarah applied for guardianship of person and estate soon after her son turned 18.  She used a local lawyer that she met through The Arc who walked the family through all the steps and answered all their questions.  The attorney made sure the process was on schedule, timely acquired all necessary documents, and walked the family through the steps answering questions along the way.  A guardian ad litum (now called a court visitor) was assigned and after meeting with Sarah’s son, made a recommendation to the court.  

At the hearing, the judge spoke directly to family and reiterated the fiduciary responsibilities of taking care of their loved one.  The guardian needs to know that the child is not a child anymore but an adult.  Sarah now makes decisions for son regarding employment, finances, relationships, housing, medical records, and consents for medical treatment.  Her son’s input is strongly taken into her consideration and he retains his right to vote.  Review of the guardianship at first was set up annually.  Once the Court was satisfied at how the guardianship is managed, a review was set for every three years.  Sarah hopes that one day in the future, one of her other children will become his guardian so she keeps the whole family involved.

Kylie

Kylie’s son experiences autism.  Her son has the ability to make choices, communicate his needs and wants and to effectively advocate for himself.  He has a history of making good decisions, with support.  When he turned 18, she chose not to petition for guardianship.  Guardianship would terminate his rights.  Their goal is for him to live his best life, as independently as possible. Instead of guardianship, her son granted his parents power of attorney.  This allows him to still be in charge of his life and still receive support.  Guardianship can be petitioned later if needed.

As her son was growing up, Kylie thought that she would need to petition for guardianship when her son became an adult.  After attending Arc educational seminars about guardianship, she learned there were other options available.  With an attorney’s help, they set up two separate powers of attorney, one for financial decisions and the other for healthcare decisions.  She and her husband also met to work on estate planning and set up a special needs trust.

Protecting your loved one with a disability can be accomplished in a variety of ways.  The Arc of Snohomish County is hosting a seminar about guardianship and other protective arrangements on Wednesday, Oct 19 at 11am.  Register for this event. 

Mi corazón te ama desde antes de conocernos

     Cuando mi hijo recibió una intervención temprana la palabra Autismo surgió de repente. Autismo era algo nuevo y desconocido y una parte interna de mi tenía miedo. Pero así como mi mente examinaba posibilidades el miedo solo crecía. Mi preocupación era si yo sabría guiarte en este camino y darte las mejores oportunidades. 

Platicando con una terapeuta de mi hijo discutimos lo que yo experimentaba; ella me preguntó las razones por las que yo adoro a mi pequeño y pregunto si un diagnóstico lo podría cambiar.

 La respuesta mía fue definitiva y natural: nada cambia lo que tu eres para mi, pensé en silencio y le dije solo -No.

 Y ese -No, ha sido una de las muestras más profundas de mi amor por ti, negar que mis sentimientos cambiaran fue admitir que te amo y nada jamas lo puede cambiar. 

Con el paso del tiempo he descubierto tus virtudes y cuanto te necesitaba. Agradezco a la vida por tener la oportunidad que me llames mamá.  

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My heart has loved you even before we met. 

     When my son received early intervention the word Autism came up all of the sudden. Autism was something new and unknown and an inner part of me was afraid of all the unknowns. But even as my mind explored possibilities, the fear only grew. My concern was whether I would know how to guide you on this path and give you the best opportunities.

Talking with my son’s therapist, we discussed what I was experiencing; she asked me the reasons why I adore my little boy and asked if a diagnosis could impact my feelings. 

My answer was definitive and natural: nothing changes who you are to me, 

I thought in silence and I just said -No.

 And that -No, has been one of the deepest signs of my love for you. Denying that my feelings could change was admitting that I love you and nothing can ever change that. Over time I have discovered your virtues and how much I needed you. I thank life for having the opportunity to have you call me mom.  

~Anonymously submitted by an Arc of Snohomish Mom 

Inclusion Starts in Preschool

I believe in inclusion in every part of society.  I have four children, two of them have Down syndrome.  They have a right to be and should be fully included in school, church, stores, activities, employment, housing, medical and therapy clinics, etc.  And it should be “normal” to be included.  Every party of society and our community should include the same percentage of the population that is disabled:  1 in 4.  Disability Impacts All of Us Infographic | CDC  That is the only way we, the non-disabled, will see how normal disability is.  When differences are included in ideas, progress is made for the better.  A simple example is ramps on sidewalks.  Originally created for people using wheelchairs, it also benefits caregivers pushing strollers, kids on bicycles and scooters, and runners who want to avoid tripping hazards.  Additionally when disability is normalized, it is less feared.  Honestly, I was terrified when my son received a diagnosis of Down syndrome when he was four days old.  I didn’t know anything about Down syndrome;  I didn’t know anyone who had Down syndrome.  I remembered at school those with Down syndrome and other intellectual and developmental disabilities were mainly kept in a classroom at the far end of school and regrettably I kept my head down when I passed them.  If I had been educated alongside students with disabilities (all kinds), I can only assume receiving the diagnosis would have been more positive.  

Most importantly, children with disabilities learn better when they are taught alongside children without disabilities.  7 NEW Research Studies to Help You Win the Fight for Inclusion – Inclusion Evolution Study after study shows this and there are no studies that show separation or segregation is beneficial.  Students learn with and are motivated by their peers.  My son with Down syndrome will join an activity when invited by a friend or his sibling more often than he will by an adult.  Don’t we all feel happier and more valued when we are intentionally included?

Presently, I spend my energy advocating for them to be included in preschool and elementary school in general education because that is their community.  I will keep advocating for them to be included in middle school and high school and beyond.  As my son quotes Buzz Lightyear, To Infinity and Beyond, I will never stop fighting for them to be included in anything and everything.  

When my son was in preschool, the only option that I understood was available to him was developmental preschool.  So that’s where he went for nearly three years.  And it was great; don’t get me wrong but I didn’t know that he could have been with general education students.  Before the IEP meeting at the end of preschool, preparing for him to enter kindergarten that fall, the preschool principal encouraged me to tour the segregated “life skills” program at a school on the other side of town and the general education kindergarten at our neighborhood school.  The “life skills” program touted their low student to teacher ratio and individually paced curriculum.  I observed the young students quietly working with paraeducators one-on-one or with tablets.  I didn’t hear any of them talk.  They seemed content but isolated from the rest of the school.  

The next day I toured the kindergarten with my typically developing three year old daughter because she happened to be home with me.  I saw a large, busy, loud class reading and playing.  The walls were decorated with artwork and short writings.  It was intimidating to see the quality of work but I kept in mind that it was May and these young students had had nearly a full year of kindergarten education already.  The classroom had a private ensuite restroom.  It was in close proximity to the playground.  The children were unabashedly friendly and excited to see me and immediately asked my little girl to join a reading group.  My son with Down syndrome was just blossoming in speech, had barely started potty training, and couldn’t write his name yet but with the proper supports and assistance I knew he would thrive there.  To be honest, I already had chosen our neighborhood school before I toured each;  the tour only solidified and bolstered my decision.   

Next month my youngest daughter who also has Down syndrome will transition from ESIT (Early Support for Infants and Toddlers) program to the preschool in our school district.  We recently had our first transition meeting with a District representative who explained the placement options within the school building:  

• blended classroom with 20 students on IEPs and without IEPs taught by general education and special education teachers, funded by ECEAP
• developmental class with 12 students all on IEPs, taught by a special education teacher with paraeducators
• Smaller ECEAP class with 12 students all or most without IPs, taught by a general education teacher

The United States Department of Education published a “Dear Colleague” letter in 2012 and affirmed in 2017 reiterating that the least restrictive environment (LRE) requirements in section 612(a)(5) of the Individuals with Disabilities Education Act (IDEA) apply to the placement of preschool children with disabilities. Dear Colleague Letter (DCL) related to Preschool Least Restrictive Environments (LRE) (PDF) That means preschool children with disabilities have the right to be educated in the same classroom as preschool children without disabilities in a regular class.  A regular class includes Head Start, kindergarten, private kindergartens or preschools, group child development centers or child care, and “preschool classes offered to an eligible pre-kindergarten population by the public school system” which in WA state is ECEAP.  If there is no public preschool in the district, then the district can pay for the student to attend a kindergarten class, private preschool, or community-based child care facility.

The ideals in the “Dear Colleague” letter were applied locally in early 2020 when a parent in the Tacoma School District filed a Special Education Citizen Complaint on behalf of the parent’s child, a student who turned three years old during the 2019-2020 school year and was eligible for special education services and therapies.  SECC 20-32 Decision (www.k12.wa.us) The decision clarifies that if a child turns three years old during the school year and has a developmental disability, the child is eligible for an ECEAP class, setting aside income requirements.  (Eligibility requirements are also published on the DCYF website:  ECEAP & Head Start | Washington State Department of Children, Youth, and Families)

That means that even though we don’t qualify with our income (although with four kids and a mortgage that is higher than I’d like to admit), my little girl can be included in a regular class at public preschool.  

Our next step is the evaluation testing process to determine if she qualifies for speech, occupational and physical therapies and specially designed instruction which I am almost certain she will.  And then write up some goals and accommodations to support her success in the regular preschool classroom.  Since goals drive placement, we will write goals that make the most sense being worked on in the regular classroom.

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Submitted by Courtney Criss

MEDIA ADVISORY:  September 13, 2022

CONTACT:

Anna Zivarts, Disability Mobility Initiative, Disability Rights Washington

206 718 8432 – annaz@dr-wa.org

Week Without Driving Participation Doubles, With Participation from Leaders Throughout Washington State

For September 19: Next Monday, September 19 kicks off Disability Mobility Initiative’s 2022 Week Without Driving Challenge. Registration has more than doubled since last year’s event, with participation from elected leaders, transportation professionals and transit agencies across the state. 

Participants include the mayors of Bellevue, Bothell, Issaquah, Olympia, Vancouver and Winthrop, and councilmembers from King, Pierce, Whatcom, Snohomish and Jefferson counties, as well as the councilmembers from the cities of Anacortes, Bellevue, Everett, Fircrest, Kenmore, Kirkland, Lacey, Liberty Lake, Mountlake Terrace, Millwood, Olympia, Port Angeles, Redmond, Seattle, Sedro-Woolley, Sequim, Tacoma and Yakima. Click here for a list of elected leaders who have registered so far.

“If you can drive, and can afford a car, you may not understand what it’s like to rely on walking, rolling, transit and asking or paying for rides. But for nearly a quarter of the people in our state – people with disabilities, young people, seniors and people who can’t afford cars or gas, this is our every day,” said Anna Zivarts, Director of the Disability Mobility Initiative.

This year, the Week Without Driving received an official proclamation from Governor Jay Inslee and Washington State Department of Transportation is also inviting all staff to participate in the challenge, and through the transportation demand management program for state workers coordinated by the Thurston Regional Planning Council, state employees will be invited to take the #WeekWithoutDriving challenge as well.
Fifteen transit agencies across the state have also endorsed the Week Without Driving, signing on to a letter where they encourage their agency staff, board and ridership to take the Week Without Driving challenge to better understand what it is like to not have the option to be able to drive yourself where you want to go.

Anyone can register to participate at  WeekwithoutDriving.life. The Disability Mobility Initiative is specifically encouraging elected leaders, transportation professionals and transit providers to participate so they can start to understand the barriers nondrivers experience in accessing our communities. To prepare, read our stories collected in the Transportation Access for Everyone Storymap and check out highlights from our 2021 event. In this video, elected leaders who participated last year encouraged others to join in 2022. 

The challenge is co-sponsored by Amazon, BERK and PRR. Co-hosts include: The Arc of Washington & the Arc of Snohomish County, All Aboard Washington, APIC Spokane, Bothellites for People Oriented Places, Cascade Bicycle Club, Center for Independence, Climate Solutions, Complete Streets Bellevue, Commute Seattle, CTANW, Downtown on the Go, Forevergreen Trails, Feet First, Front and Centered, Futurewise, Greater Spokane Progress, Hopelink, Kirkland Greenways, Leafline Trails Coalition, MLK Labor, Move Redmond, National Federation of the Blind of Washington State, People First of Washington & People First of Snohomish County, People for People, Seattle Neighborhood Greenways, Seattle Subway, Share the Cities, Sierra Club, Snohomish County Public Utility District, Snohomish County Transportation Coalition, Snoqualmie Valley Transit, Thurston Regional Planning Council, Transit Riders Union, Transportation Choices Coalition, Twin Star Credit Union, The Urbanist, Walk Roll Pierce County, Washington Council of the Blind, WA Sr. Lobby, Washington Physicians for Social Responsibility, Whatcom Smart Trips, 350 Seattle.

Why the Week Without Driving Challenge Matters for Snohomish County

The 2nd annual Week Without Driving Challenge will be held this year from September 19th through September 25th, 2022.

People First of Snohomish County, a group by and for adult self-advocates with intellectual and developmental disabilities, is co-hosting the 2022 event with Disability Rights Washington (DRW), through their Disability Mobility Initiative.

Together, DRW and People First of Snohomish County, along with community partners across the state, challenge elected officials and government leaders to commit to one week without driving. They challenge participants to go about their lives, for one week, utilizing alternative, non-driving options only. This may mean walking their kids to school, cycling to work, planning to reach their children’s extra-curricular activities or sports practices by bus, or relying on others to drive them to and from important meetings and appointments.

Those who commit to this challenge will, no doubt, find it extremely challenging and, at times, exceedingly frustrating. And, they are only committing to one week!

But, this is a daily reality for many people in our state, including individuals with disabilities.

In discussing the upcoming Week Without Driving, the Snohomish County Transportation Coalition, known locally as SnoTrac, shared some important statistics around transit use in Snohomish County.

“Much of our communities have been engineered to get around by a car…. People in Snohomish County’s areas underserved by transit are 240% more likely to say they will never take transit than people in well-served areas. Yet, people who are transportation-dependent, such as people with disabilities and low incomes, are 3-times more likely to use transit than transportation-independent individuals. As a result, dependent individuals, especially in rural areas, are more isolated and have greater difficulty getting and hold a job.”

In our county, according to SnoTrac metrics, those who can drive, or are “transportation-independent,” are 7.7 times MORE LIKELY to hold jobs than those who are transportation-dependent. They are also more connected and less isolated as they are found to be 2.2 times MORE LIKELY than transportation-dependent individuals to take a trip for “non-commute purposes” (e.g. for enjoyment or to participate in community activities) in the past week than those considered transportation-dependent. (Read more at gosnotrac.org/week-without-driving.)

This is why it is important to design our communities in a way that ensures reliable transit access for all. Public transportation and multi-modal connectivity in our communities must be prioritized.

SnoTrac writes: “To make our communities more accessible, we need to: Expand transit and paratransit services, improve walking and bicycling infrastructure, ensure the transportation infrastructure is designed for people with disabilities, and build compact communities where housing, shopping, schools, jobs and services are located within walking and rolling distances.”

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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.

The Arc of Snohomish County and Community Partners Will Offer Limited Screenings of Award-Winning Caregiving Documentary “Unseen” on September 15, 16 & 17

The Arc of Snohomish County, in partnership with community organizations located statewide, will offer THREE screenings of the newly released and award-winning documentary Unseen.

This documentary film shines a light on the many challenges of caregiving and the physical and mental toll commonly experienced by parents and family caregivers raising children with developmental disabilities with high-support and/or complex healthcare needs.

Virtual screenings will be held on September 15th, 16th and 17th, 2022. Each screening will be followed by a panel discussion featuring parent and family caregivers from across the state, as well as researchers who have focused their work on studying the personal, family and community wide impacts of caregiving. Registration is FREE, but space is limited.

REGISTER USING THE LINKS BELOW:

Thursday, September 15th @ 10 am – 12 Noon

Link to register: https://tiny.one/UnseenThurs

Friday, September 16th @ 6 – 8 pm

Link to register: https://tiny.one/UnseenFri

Saturday, September 17th @ 10 am – 12 Noon

Link to register: https://tiny.one/UnseenSat

More About the Film:

“An estimated 16.8 million people in America are caring for a child with disabilities. Many parent caregivers for children or adults who are disabled or medically complex are exhausted and isolated. Their mental and physical struggle is a public health crisis that costs us all. The ‘Unseen’ documentary gives an unfiltered, honest glimpse into their lives to enable a change for millions of caregivers and their families.

The film follows Jess and Ryan Ronne, a blended family with 8 children, including Lucas, who has profound disabilities requiring total care. Their situation has gotten more and more challenging as Lucas gets older and stronger. With limited resources and support, caregiving takes a toll on their physical and mental health.

It is a common story among parent caregivers: the isolation, uncertainty about the future, lack of options, and a never-ending daily to-do list means the role of caregiver overpowers nearly every other facet of life. Video diaries from diverse caregivers featured in the film illustrate this universality, while interviews with mental health experts and policy/legal advocates provide a broader view on the societal impacts.” Learn more at caregiverdoc.com.

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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.

Week Without Driving Challenge 2022

The 2nd annual Week Without Driving Challenge will be held September 19th ­- 25th, 2022.

The Week Without Driving Challenge is a Disability Mobility Initiative led by Disability Rights Washington (DRW) and co-hosted by various community partners across the state. The challenge invites elected officials and other leaders to forego driving for a full week to better understand the difficulty and challenges of accessing community programs and services, as well as school or work, and other activities when you lack the option of driving.

Participating in this challenge is also one way to raise awareness about the need for affordable, accessible and reliable public transportation and connectivity in city planning that ensures easy access to different modes of transportation.

Anyone can participate in the Week Without Driving Challenge, share their personal experiences and raise awareness about these topics.

Will you commit to a full week without driving?

Sign up to join the #WeekWithoutDriving at tinyurl.com/mvuymc5p.

Why is this important?

As shared on the DRW website: “If you can drive or afford a car, you may not understand what it’s like to rely on walking, rolling, transit and asking for rides. But for nearly a quarter of the people in our state — people with disabilities, young people, seniors and people you can’t afford cars or gas, this is our everyday.”

For individuals with disabilities, “access to transportation is consistently listed as one of the top concerns.” It is important that individuals have accessible, reliable and convenient access to goods and services, programs and places in their communities. However, that is too often not the case. There are far too many transportation barriers that impede access to the community.

Furthermore, it is critical that elected officials understand these issues as access to a vehicle and the ability to independently drive from one place to another is an equity concern. Many individuals do not have a driver’s license and many others lack access to a vehicle. DRW further elaborates on this tie to equity: “Those of us who can’t drive or don’t have access to a car are more likely to be disabled, BIPOC and immigrants. We are also elders and young people, as well as those who can’t afford to own or maintain a vehicle.” (Read more here.)

With a more personal understanding of these issues, elected officials and leaders who take part in the Week Without Driving Challenge can put their new knowledge to use through their legislative work and policymaking and by collaboratively planning vibrant communities that work for everyone.

YOU’RE INVITED TO PARTICIPATE!!

Learn more about the Week Without Driving Challenge at disabilityrightswa.org/programs/disabilitymobility.

Additional Resources:

• Transportation Access for Everyone Storymap — by Disability Rights Washington: org/storymap
• Transportation Access for Everyone: Research Paper Release — by Disability Rights Washington: org/transportation-access-for-everyone-research-paper-release
• First Annual #WeekWithoutDriving Changes the Conversation (November 11, 2021) — by Disability Rights Washington: org/first-annual-week-without-driving-changes-the-conversation

Local News Stories:

• Being Car-Less Means Cold Waits, Long Trips: Its ‘Exhasting’ (November 1, 2021) — published by Everett Herald: com/news/being-car-less-means-cold-waits-long-trips-its-exhausting
• Reader View: A Week Without Driving? For Some, That’s Every Week (October 30, 2021) — by Luke Distelhorst, Edmonds City Council Position 2, published by My Edmonds News: com/2021/10/reader-view-a-week-without-driving-for-some-thats-every-week
• Too Many Sidewalks Aren’t Built for People with Disabilities (November 8, 2021) — published by Everett Herald: com/news/too-many-sidewalks-arent-built-for-people-with-disabilities

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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.