Welcome to The Arc Amplified!
Sharing stories of inclusion, advocacy, and empowerment across Snohomish County
A source for sharing stories of inclusion and belonging, bold activism and local change-makers in action.
The mission of this platform is to amplify diverse voices and “good news” stories from within the disability community in Snohomish County and across the region.
*The Arc Amplified is an online publication of The Arc of Snohomish County. Learn more about our mission and values at arcsno.org/about
Do you have a story of inclusion you want to share?
Are you leading local advocacy efforts? Has your family or loved one benefited from activities or programs in Snohomish County that are designed to advance community inclusion?
We want to know!
Send an email to:
Leadership & Advocacy Program Manager
or call (425) 258-2459 x 106.
Community Transit plans to expand ZIP Shuttle
Community Transit has been identifying areas in Snohomish County where people who don’t drive are needing access to public transit to get around their communities. Lynnwood developed a micro transit system in collaboration with Community Transit and community non- profit partners so that people have an easier way to get around. This pilot program called Zip is currently in the stage where it is being studied. The feedback from people who use it has been positive.
Community Transit is now in the early planning stages of expanding this service to other cities (Arlington, Lake Stevens, and Darrington) who are isolated from larger communities. These areas are looking to have more of a shuttle-type service, rather than a bus system, since these areas are smaller. I learned that Darrington had no public transportation access for almost 30 years. They recently partnered with Homage Senior Services Transportation Assistance Program (TAP) to help both Senior Citizens and Persons with Disabilities by providing transportation access to areas where there are needed services (i.e. from a rural area where there is no public transportation access to a bigger city). Lake Stevens service area seems only to be concentrated around the lake itself and those who live further out of the area who have little to no access to different areas around the city itself.
Developing a system like Zip Shuttle in smaller areas might better benefit from a fixed bus route. It is the same cost as a regular bus, but you have more payment options available, like Orca/Debit/credit card/cash. Children ride for free until age 19. The service also has child and baby car seats available for use. As well as bike racks. It works on an on-demand and shared ride basis like Uber/Lyft through a phone app. They plan to have the service in these areas running within the next 2 years.
Those interested in learning more about this service can find information on Community Transits webpage https://www.CommunityTransit.org/Zip Shuttle.
By: Leigh Spruce, Self-Advocacy Coordinator, Leigh@arcsno.org
Leadership Through Art - Painting Orcas
What does painting Orca whales have anything to do with Leadership?
Orca whales are powerful, regal creatures.
They can tip over a boat or lead fishermen to better waters.
Self-advocates met in early August for a painting class where they all painted an Orca whale leaping out of the water.
Art teacher Jessie Tear found the Orca picture to give inspiration to the artists and taught some painting techniques.
All the participants used their unique talents and perspectives to create their own interpretations.
The paintings were then submitted to the Evergreen State Fair
where they received a purple banner, blue ribbons and a
August US Congressional Recess
The United States Congress will be going into recess from July 31 through Labor Day Weekend this year. Two key issues that are going to be considered are Social Security (“SSI”) Income Limits and Marriage Penalty Act. Neither of these issues have been updated since 1989. SSI has established resource limits in order to receive benefits. The Arc of the United States is asking for an increase in these limits from $2000/month per individual on SSDI and $3000/month for couples to $10,000/individual and $20,000 for couples. With times changing, and cost of living having increased considerably, this change is very necessary. The issue with writing and passing these bills is the cost of writing the bills.
These bills currently don’t have bill numbers; however, we need to raise awareness on why this is needed. In order for this to get this on the floor in Congress, it needs bipartisan support. We as advocates really need to get in touch with your Representatives and Senators to help them to understand why these Bills are necessary.
Don’t get discouraged if you can’t speak to your Representatives and Senators directly. You can get involved by contacting their personnel, as well as by attending a Town Hall meeting that would be scheduled in their area. Share your stories. Sign up on their websites and get email alerts. You can also contact Aides to host an action day. They can help you with what to say to your legislators. Share this information with others. There is an advocacy toolkit on The Arc of US website where you can find out more. ‘Lookout Days’ are posted every Wednesday throughout August to get alerts. You also follow on Facebook, Instagram and Twitter. Get involved with your local chapter of The Arc. Contact Jake at The Arc of Snohomish County for legislative updates: email@example.com.
The Arc of the U.S. will be hosting Advocacy Days in August. During this period, you can sign up to get email alerts in these important issues at https://thearc.org
View the August US Congressional Resess Recording from The Arc US
Leigh Spruce is the Self-Advocacy Coordinator for The Arc of Snohomish County. She can be reached at firstname.lastname@example.org or 425-258-2459 ext 103.
“Special Needs” OR “Disability”... Do words matter?
Facebook can be time-waster but occasionally someone initiates a thoughtful discussion. In one of the groups to which I belong (several groups for parents with kids with Down syndrome), a mom posted a question of whether we should use the term special needs or disability. Other moms commented with their thoughts and resources and it got me thinking why someone might choose an alternative to the word disability.
Perhaps because the word disability has been associated with negativity. The definition of disability is a physical or mental condition that limits a person's movements, senses, or activities. It makes people think that a disabled person can’t do something. So an alternate description to mean the person requires specialized services or assistance was created: special needs. However, it’s more of a euphemism which is meant to downplay something negative.
Lately, more and more people with disabilities are advocating for the term disability to be used and the term special needs to be eradicated from our vocabulary. Lawrence Carter-Long, Public Affairs Manager of the National Council on Disability created the #SayTheWord campaign to encourage people to say disabled and acknowledge the power of disability culture and identity. In an article for USA Today in June 2021, Lisette Torres-Gerald, board secretary for the National Coalition for Latinxs with Disabilities, states "My needs are not 'special;' they are the same, human needs that everyone else has, and I should be able to fully participate in society just as much as the next person." Several actors with Down syndrome participated in a World Down Syndrome Day video in 2017 explaining that they don’t have special needs; they have human needs like everyone else. I highly recommend taking 5 minutes out of your day to watch this video!
It should be noted that the term disability is the one used in federal and state laws. The ADA stands for the Americans with Disabilities Act and IDEA stands for the Individuals with Disabilities Education Act. Using the word disability provides an individual with protections under the law while special needs does not. Additionally, accommodations should allow those with and those without disabilities to access a venue or participate in an event.
In an article on the online blog “The Mighty” another good point was mentioned about mocking or bullying. The term special or special needs can be used to mock and bully people with disabilities. Rarely is the term disability used to mock.
Why do some of us parents not like the word disability? When my son with Down syndrome was born 10 years ago, I was feeling sad, scared, overwhelmed, out of control, isolated, worried…the list goes on. For months I could not say the words Down syndrome without tearing up. To me, the words Down syndrome were extremely negative. I worried that he would not be accepted, included, loved. I worried that he would have the worst schooling, the worst job, the worst life ahead of him.
Once I got him started with the birth-to-three (Early Support for Infants and Toddlers or ESIT) program and I saw him working hard at meeting milestones, I felt more comfortable. When I met other families who had kids with Ds, I felt more confident. When I started volunteering for the Down Syndrome Center of Puget Sound (f/k/a the Down Syndrome Community), I saw what was possible. And when my fourth child was diagnosed prenatally with Down syndrome, I was happy and not the least bit sorry.
As parents we all have our journeys learning about, accepting and even celebrating our children’s diagnosis. I wonder if that changes our word choices too.
**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.
Special Education Policy Changes
At a Glance
We’ll say it – special education is a big deal! From curriculum modifications to assistive technology to occupational and physical therapy, special education supports and services help students with disabilities thrive. Between the ages of 3 and 21, individuals with intellectual and developmental disabilities have a federally recognized right to a free and appropriate public education. In accordance with this legal commitment, Individualized Education Programs (IEPs) establish student education goals and guide the provision of special education services.The 2023 Washington State legislative session heard many different bills seeking to make changes to state level special education law and policy. This edition of Arc Amplified will take a closer look at special education bills that passed and “died,” and what you need to know about the policy changes to come.
Special Education Funding Cap
In the current 2022-2023 school year, Washington State has a special education funding cap set at 13.5%. This means that funding for special education services is capped at 13.5% of a school district’s total student population. School districts must use other funding sources, such as local levies and safety net funding, to pay for special education services when more than 13.5% of the student population have IEPs. For example, if 18.5% of the students in a school district receive special education services, state special education funding will cap at 13.5% and the district will have to use other funding for the remaining 5% of the student population.
A Tale of Two Bills
This year, two different special education bills (HB 1436 and SB 5311) sought to make changes to the same special education funding formula. Throughout the legislative session, legislators in the House and the Senate made significant amendments to both HB 1436 and SB 5311. As the changes unfolded, so too did changes in which bill The Arc of Washington State favored over the other. The original HB 1436 would incrementally increase the special education funding cap until removing it entirely in the 2027-2028 school year, and SB 5311 would increase the special education funding cap from 13.5% to 15%. As of Friday, April 21st, the House and Senate reached a compromise with these two bills. They put the new striking amendment on HB 1436, which is now the bill moving forward. The special education funding cap is raised to 15% starting in the 2023-2024 school year. This bill also requires reviews and technical assistance for disproportionality, and adds special education ombuds, run by the Office of the Education Ombuds, to each educational service district (ESD). Additionally, it requires a specific accounting methodology through 2026-27, lowers the threshold for accessing safety net for high-cost IEPs, and provides professional development for inclusionary practices. The Senate passed this new bill unanimously and the House has signed, and now the final step is for the Governor to sign it into law!
What Passed Both Chambers?
Of this year’s education related bills, many made significant progress towards becoming Washington State law. Here are the bills that have passed both the House and the Senate:
- HB 1207 will create new resources and policies for addressing harassment, intimidation, bullying, and discrimination in schools. The Arc of Washington State supports this bill.
- HB 1238 will provide one free breakfast and one free lunch to students who request a meal in grades K-4 in school districts that meet certain federal poverty guidelines. The Arc of Washington State supports this bill.
- HB 1550 will establish a transition to kindergarten program for eligible children. The Arc of Washington State lists HB 1550 as under review, meaning that The Arc of Washington State has not taken a firm stance on this bill.
- SB 5243 will establish new requirements and advanced planning for high school and beyond plans for students both with and without IEPs. The Arc of Washington State supports this bill.
- SB 5315 will create standards for approval, monitoring, and investigating Non-Public Agencies serving students with disabilities. The Arc of Washington State supports this bill.
What Didn’t Pass?
Other education bills from earlier in session will not pass this year. As this year is the first year in the 2023-2024 biennium, it is possible for this year’s “dead” bills to carry over into next year’s legislative session to try again.
- HB 1109 died when it did not pass out of Senate Ways and Means. This bill would incentivize school districts to conduct IEP meetings during the summer. This would allow students with IEPs to start the school year with their IEP goals, curriculum modifications, and special education services in place. The Arc of Washington State supported this bill.
- HB 1248 died in House Rules. This bill would expand student transportation funding to include various other incidental transportation costs, such as out of district transportation. Currently, Washington State school transportation funding only covers standard home to school transportation routes. All extra services are not funded by the state and instead are covered by the district. The Arc of Washington State supported this bill.
- HB 1305 died in House Rules. This bill would improve access to the federally mandated free and appropriate public education for students with disabilities. Among the many changes to access to special education services, this bill also originally would have changed the burden of proof for denial of services from the parent to the district. This would have opened up many more special education opportunities for students who need them, and made it more difficult for districts to deny those services. This provision was removed from a later version of the bill, and this caused it to lose support from most of the IDD community. The Arc of Washington State supported the original bill.
- HB 1479 died when it did not make it out of the Senate Committee on Early Learning and K-12 Education. This bill would completely remove student isolation from schools, and greatly limit restraint to be used only in the instance of safety for the student or others. The Arc of Washington State supported this bill.
- SB 5031 died when the Senate refused to concur with the House amendments. This bill would have allowed out-of-state Non-Public Agencies to apply for Washington State special education safety net funding. The Arc of Washington State listed this bill as under review.
- SB 5174 died when the House insisted on its amendments after the Senate refused to concur. This bill would have required OSPI to cover school transportations costs and would also make changes to the transportation funding formula. The Arc of Washington State listed this bill as under review.
Want to Learn More?
The Washington State 2023 legislative session adjourned sine die on Sunday, April 23rd. Join The Arc of Snohomish County on Thursday, May 18th from 6-7 PM for our Legislative Recap event! Jake and Rachel will share the highlights from the legislative session and the important new policy changes affecting Washington State's intellectual and developmental disability community. Join us on Zoom to learn more about the bills that passed and "died," answer your questions about the legislative session, and discuss next steps for continued advocacy. Register to receive the Legislative Recap Zoom link.
Transition Club Empowers the Next Generation of Self-Advocate Leaders
Why does our community need self-advocate leaders?
There are many local committees, boards, and planning groups create programs, activities, projects, and make a difference in our community. This includes anything from Friends of the Library, to parks committees, to PTAs, to groups advising local and state policy makers. It is important that the voices of those with Intellectual and Developmental Disabilities (IDD) are represented.
What are Transition Clubs?Transition services are offered by school districts for students ages (18-21) who are on an IEP for the purpose of transitioning students from high school into the adult world.The program focuses on building job and life skills and encourages employment.The Arc partners with 10 local school districts and facilitates 21 monthly Transition Clubs.
Students enrolled in Transition services in 10 districts in Snohomish County participate in Transition Clubs. Some districts have Transition Club's located at High Schools working with students ages 14-18.
Jessie Moore, Leadership Development Coordinator for The Arc of Snohomish County, has been growing this Transition Clubs (that started with one program in 2009) for the last 7 years. She creates the games and activities, and plans the discussion topics. Jessie or another Arc staff member facilitates each Transition Club. When possible, a self-advocate (trained Arc leader) co-facilitates the Transition Club sharing their lived experience to mentor students. The Arc has 10 Transition Club leaders/Co-facilitators, 5 of them are previous Transition Club students.
What goes on there?The Charting the Life Course tools are used as a road map for Transition Club discussions.Adapted games or activities such as bingo, trivia, right/left/center, etc. are meant to lead into questions and conversations about self-advocacy, self-determination, and self-awareness.Students are encouraged to think about the supports they personally need and advocate for themselves. Students learn to identify short and long-term goals, recognize strengths, and make person-centered choices. They also practice speaking up!
What are the outcomes?Transition Clubs teach students how to effectively communicate their needs and required supports.Transition Clubs are an introduction to leadership; students are encouraged to join leadership with The Arc upon exiting the transition program.
Pictured Left: Dylan Pezoldt (Transition Club Leader) sharing input at the Arlington Public Library Community input meeting
Examples of leadership and personal growth for self-advocate leaders:*Building confidence to speak and present in front of large groups*Facilitating a Transition Club independently*Educating local police and policy makers on how to support individuals with IDD*Advocating for services to support individuals with IDD and their families*Leading local service organizations and members of local boards and committees*Volunteering to support individuals in local community based programs and sports*Self-Advocating for paid employment, living independently in the community*Developing skills for employment, which has led to promotions and raises.
For more information about Transition Club contact:
Jessie Moore, Leadership Development Coordinator Jessie@arcsno.org / 425-258-2459 x109
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 email@example.com 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.
**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.
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 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 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’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.