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Guardianship & Alternatives

Guardianship Alternatives The Arc Amplified

Guardianship & Alternatives

Recently the guardianship laws in Washington state changed.  As of the beginning of 2022, there are now two types of protective arrangementsguardianship 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 guardianshipGuardianship 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

my heart 1

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 

Week Without Driving Participation Doubles

Week Without Driving Disability Rights WA 913 Press Release The Arc Amplified

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.

Week Without Driving Letter from WA Transit Agencies Small Graphic

“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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Week Without Driving Inslee Proclamation Small Graphic

 

 

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. 

Week Without Driving Sponsors Small Graphic

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.

Inclusion Starts in Preschool

Inclusion Starts in Preschool 1

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

Why the Week Without Driving Challenge Matters for Snohomish County

100. Why Week Without Driving Matters to Snohomish County The Arc Amplified

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.

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The Arc of Snohomish County is currently working remotely: 

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