Do words matter?

“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

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

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?

Who participates?

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.

Who leads? 

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?

What are the outcomes?

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:

ACCESSIBLE Community Transit Transportation

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

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

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

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

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

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

Week Without Driving Participation Doubles

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.