Special Education in Washington State

specialeducationprogram2The McCleary case currently before the Washington Supreme Court is a landmark case of substantial importance that will have lasting impact on our state’s public education system, addressing the long-outdated system of funding for ALL children in our public schools. This is a critical time to raise the issues that face students with disabilities every day in our public schools.  Students with disabilities are seated squarely in the “opportunity gap” by any measure – including low graduation rates, high rates of disciplinary action including suspension and expulsion for behavior related to their disability, low rates of inclusion and high rates of isolation, use of restraint in classrooms, and low rates of employment and access to post-secondary training after graduation.

The Arc of King County joined with The Arc of Washington and other advocates for children with disabilities in filing an Amicus Brief in McCleary v State of Washington to bring attention to these concerns. This is the first Amicus Brief in the landmark school-funding case to focus on special education. An amicus is a “friend of the court” legal brief that offers a unique perspective or new set of facts for the court to consider.  Courts usually only hear testimony and consider evidence from those witnesses presented by the parties and an amicus brief brings additional attention to important information that the court may not have received during trial.

As cited in the brief, “More than 125,000 students in Washington have disabilities requiring special education. For a fair chance to succeed, these children must have special instruction designed to meet their individual needs,” adding, “the Legislature has paid for special education as if every student needs the same funding, instead of fully funding the actual costs of properly educating children with disabilities.”

The Supreme Court has been imposing sanctions of $100,000 a day against the State until it adopts a complete plan for complying with its constitutional duty to fully finance basic education. The State has asked for the sanctions to be lifted, but an analysis by Arc of Washington found serious special education funding gaps, thus denying part of basic education accessibility. For example, new state data shows:

  • The State allocates money to districts assuming 12.7 percent of each district’s student population in Kindergarten through 12th grade are enrolled in special education. However, at least 120 school districtscurrently have a greater percentage of special education students than the State pays for;
  • Large districts such as Seattle and Spokane spend millions of dollars more on special education than the State provides, using local tax levies to make up for the wide discrepancy between actual costs and State allocations.

Special education falls within the Legislature’s definition of “basic education,” which must provide broad educational opportunities and prepare all children to be self-supporting citizens. The Amicus Brief explains that the Legislature has overlooked the special needs of children with disabilities in planning funding reforms. In addition, the brief cites concerns that the current state budget grossly underfunds paraeducators, who provide nearly 60% of direct instruction to special education students in Washington State.

“When it comes to funding basic education, children with disabilities have the greatest needs, and their voice must be heard when determining if the ‘paramount duty’ to fully fund education has been met,” said Katherine George, of counsel, Harrison-Benis LLP and author of the Amicus Brief.

The Arc of King County and The Arc of Washington are excited to take this bold step toward ensuring that students with disabilities have equitable opportunities to be included and access all of the same programs and services other children enjoy in our public schools with the same chances to achieve and succeed in their learning.

To read more, please visit:


Community Change Champions

This month, we want to highlight a staff person who is doing great work as a change agent in his community. You probably have already met him – Eric Matthes, the coordinator of the Community Change Champions at The Arc of King County. He is a longtime activist advocate who is heavily involved in legislative advocacy. He is also an adult with Down syndrome.

In the last legislative session, HB 2403 was a bill relating to Down syndrome resources of interest for many advocacy groups. Eric, along with many activist advocates, parents and professionals, spoke to their legislators to emphasize the importance of this bill. Eric testified at a hearing regarding this bill, by sharing his personal story of being born with Down syndrome and the lack of information and support the medical professionals provided to his parents. The result of the advocacy and education was HB 2403 was signed into state law. Now medical professionals are to provide up-to-date, evidence-based, written information about Down syndrome regarding support services, hotlines, Down syndrome organizations, and support groups to expectant parents receiving a positive prenatal diagnosis and parents who have a child with Down syndrome in culturally and linguistically appropriate form. To learn more about HB 2403 go to, http://lawfilesext.leg.wa.gov/biennium/2015-16/Pdf/Bills/House%20Passed%20Legislature/2403.PL.pdf

This is an example of what local activist advocates can do in our state. Eric’s program supports and educates people with disabilities to become strong activist advocates for themselves and the community. Recently the name of the program was updated to Community Change Champions, reflecting the real change that happens when these activist advocates get involved. Along with this name change came the development of the mission, vision and values of Community Change Champions.

Mission – We promote the civil rights of people with intellectual and developmental disabilities by empowering activist advocates with leadership and advocacy skills to ensure full inclusion and community involvement throughout their lifetime.

Vision – We envision a society in which people with intellectual and developmental disabilities are not only respected but engaged as equal citizens who make valuable contributions within their community and have the tools and opportunities to make personal and civic decisions to ensure the civil rights of all people.


  • Don’t work on us; work with us
  • Nothing about us without us
  • Equity for all
  • Label jars not people
  • Together we make a difference

Community Change Champions connects people with disabilities to advocacy groups in Washington state, empowers people to become strong leaders and activist advocates, and educates King County Legislators about important disability related topics and current legislation that are top priorities to people with disabilities and advocacy groups to create a more inclusive community with community based supports.

If you or someone you know wants to get connected to legislative advocacy contact Eric Matthes to learn more about the opportunities in King County.

Email: ematthes@arcofkingcounty.org

Phone: 206-829-7044

“Go Big” Idealism

Ivanova Smith, a former intern from The Arc of King County who has autism, is our blogger this month. She is a strong advocate for disability rights, and an equally passionate advocate for civil rights for everyone. She can often be seen in Olympia or at special events around the state making sure that people with I/DD are being represented and are getting equal treatment. 


“Go Big” Idealism

Some people tell me that I’m too idealistic. But what’s wrong with idealism when it means creating a world where everyone with a disability has their freedom?

Some people believe that people with severe disabilities can’t handle the type of freedoms that we are fighting for all people to share. They separate us by ability but whether we are ‘high functioning’ or ‘lower functioning’, we all share the same desires. We don’t want to be imprisoned! We want to get equal wages for our work! We want to be treated with respect! We want to be included!

These people claim we are too idealistic, but people thought that Martin Luther King was unrealistic too!! The civil rights movement for black citizens asked for the same basic rights we are seeking. People with disabilities desire inclusion. They may think that my “Go Big” idealism is it too much ask for, but Dr. King and I disagree with them.

I advocate against institutions because people like me just want our freedom to live in the community. Yet the people who support institutions act like we are too idealistic. They believe that living in an institution is not imprisonment. They refuse to acknowledge how many rights are taken away from the people who are institutionalized.

There is another part of this that really bothers me. When I attend legislative hearings, I Ivanova3hear some parents complain about their DD children to the legislature. I don’t understand how they call their own children a burden. When I hear this, it crushes me. It hurts just like when someone calls me retard over and over again. It is degrading.

These comments make me sad and confused, especially when the same people then try to act nice to me. They say terrible things about their children and then smile and try to be friends with self-advocates like me. It’s painful to experience, yet I face it a lot during the legislative session. They claim to be allies in some ways, but they complain when people like me want to close institutions and end sheltered workshops.

They may not understand it, but not allowing us to be equal and making excuses to exclude us is more offensive than the R-word to me. There are lots of ways to degrade someone with disabilities without using the R-word.

  • Tell me I don’t deserve my rights.
  • Describe people like me as a burden to the legislature.
  • Pay me less for my work
  • Tell me that I belong in an institution.

Ivanova2Many people know about, and have joined, the campaign started by Special Olympics and Best Buddies, to ‘spread the word to end the word’. The word ‘retarded’ has hurt our community, but negative attitudes about people with I/DD have hurt us more. A single word doesn’t have the power to exclude us; it’s societal attitudes that isolate us! If you say you won’t use the R-word but still support institutions, then I don’t think you really understand the message.

I don’t want to just ban a word. I want to change a mindset! I want people to see us as equals. People with I/DD are epic people, with an epic culture, and I want that culture to be celebrated. The only way to do that is to include us equally, in everything. Let’s GO BIG together and change people’s minds.

The Fight for Disability Rights Continues

Our special blogger this month is Stacy Gillett, Executive Director of The Arc of King County. Upon reflecting on the many victories that people with I/DD have enjoyed in the past 80 years, Stacy also recognizes the fight that continues today.StacyVOA

The Fight for Disability Rights Continues

The Arc of King County has the privilege of partnering every day with people who experience intellectual and developmental disabilities and their families – supporting them to live full, meaningful lives; to give voice to their needs; and to champion their perspective.

We respect and respond to individual choice as the guiding force in supporting the lives of the people we work with, believing that all individuals with intellectual and developmental disabilities are entitled to advocate for themselves with the assurance that their desires, interests, and preferences will be respected and honored. In short, what we want for ourselves, we want for everyone.

As human citizens, all individuals should be given the opportunity to have an education, a job, access to healthcare, the right to enjoy and access their community, and to experience friendships and relationships.  Imagine not being able to communicate with your friends and family, not being able to choose when and where you want to go, or being isolated every day from enjoying your own neighborhood or a job that you love – because you need help to access every part of your environment.  For so many people with intellectual and developmental disabilities, this continues to be a reality.  While most are no longer institutionalized, a number of adults with I/DD still live in isolation from relationships, are not meaningfully employed, and lack access to any real interaction outside their homes.

While we have come a long way in the last eight decades, there’s a remarkable amount of opportunity ahead in both the next year and the next decade. As we enter this new era, there are several distinct areas of advocacy and change that we are focused on driving forward. These focus areas include:

  • Facilitating natural relationships that connect people with I/DD to people and places in their communities, reducing the amount of isolation experienced by persons with I/DD and their families.
  • Continually working to be innovative and break new ground in improving how we operate our own organization to bring about change for the future.
  • Organizationally and individually, dedicating ourselves to those individuals and families who have placed their trust in us to provide quality, individualized self-directed supports.
  • Encouraging and facilitating family education and engagement as fundamental to achieving positive outcomes for people with intellectual and developmental disabilities.
  • Working with self-advocates to build and unleash incredible new experiences and opportunities to live, learn, work and play in the community, which benefits us all.
  • Delivering new ideas and services with life-changing improvements in how people with I/DD better access their environments, become more self-sufficient, and have a voice and choice in every aspect of their lives

We are uniquely positioned to lead in these areas given the breadth of our staff expertise and services portfolio, as well as our growing partnerships with businesses, neighborhoods, and communities. It truly is a new era at The Arc of King County — an era of incredible opportunity for us, and for the nearly 21,000 children and adults in King County who are estimated to experience a severe developmental disability, including intellectual disabilities, epilepsy, cerebral palsy and autism.

When I pause to reflect on how far we’ve come over the past few years and how much further we’ll go in the next one, I couldn’t be more excited and optimistic. We see an unprecedented amount of opportunity for the long term. We hope you will join us as we continue to move the disability rights movement forward.

Wings for Autism: What Happened Afterwards

We are so excited to have blogger, Ryan Fox, talk about his experiences after he participated in The Arc of King County’s Wings for Autism program

IMG_2152.JPGOne of my favorite books is Oh, the Places You’ll Go! by Dr. Seuss. It’s about adventure, courage, and the fun of taking on new challenges. I recommend it. As a person with autism, this book also reminds me of the importance of travel. The Arc of King County is my very own Dr. Seuss—through their Wings for Autism events they support my yearning to take on new travel adventures.

I was very young when my parents started taking me places. They wanted me to adapt to new experiences and not get stuck in a too-structured life. “Life is either a daring adventure or nothing,” wrote Helen Keller. We chose adventure. I rode in cars and buses, on trains and ferry boats, and even in airplanes. To this day, I’ve never had a problem with most of these modes of transportation, but something happened to me on an airplane once as we were leaving Chicago. I was very worried about turbulence and bothered by the cabin’s smell, and when the flight attendants thought I was ill, they almost asked us to get off the airplane. It scared my mom and me. Although we made it home okay, I never wanted to go on an airplane again, and nothing my family did could help me feel better. My sister tried giving me a vial of good-smelling oil to wear around my neck, but I still panicked. I tried to relax, but I was always afraid the crew would throw me off the plane. In 6th grade, after we ended up having to take a train all the way across the country to my grandmother’s funeral just so I could avoid flying, my mom decided to try getting me flying lessons. She thought maybe if I understood more about the operation of the plane and could take control of it, I could eventually be comfortable. I learned a lot about airplanes and airports through flying lessons (which I loved), but I still didn’t want to fly on a jetliner. Whenever I tried to face this fear, I still panicked.

IMG_3048.JPGOne day, we learned that the Arc of King County was sponsoring an event called Wings for Autism at SeaTac Airport. It was patterned after a program launched by the Charles River Center in Boston where a family had planned a trip to Disneyland, and when they got to the airport their autistic child had a meltdown so they had to cancel their vacation. They then created a practice day for families to rehearse going through the airport. I decided to sign up to attend the very first Wings for Autism event at SeaTac in January 2014 as a junior in college. It was a fantastic learning experience. The Arc teamed up with Alaska Airlines, Port of Seattle personnel, TSA, and others. Kids learned to patiently stand in line, go on the escalators and trains, and wait in the boarding area. The highlight was getting to board a real airplane to taxi around on the ramp without taking off. The professionals learned as much that day about how to help families as the families learned about how to travel. It was also a chance to bond with other people dealing with the same problems. I never saw so many other kids wearing big red headphones in my life! (I had occasionally worn them myself in K-12 and people made fun of me—at this event, they were normal and fine.) It was great to see everyone.

The most important thing about Wings for Autism is what happens at home afterward. Families can talk with their kids about what they learned and what it was like, review their photos and videos, and start rehearsing. All of this gives them time to prepare for their next visit to the airport for a real trip.

Wings2014_CockpitI didn’t expect that Wings for Autism day would mean so much to me. I just wanted to be at the airport and help out. But what happened was a miracle and has changed my whole life. Being invited to ride on the aircraft with no fear of being asked to deplane, I realized I didn’t have to be afraid of air travel. I practiced talking to the Alaska Airlines pilots, agents, and flight attendants and introducing myself, explaining my fears and needs. They completely understood! They gave me a fantastic idea to make a little card about autism and me. I have taken these cards on subsequent trips and always give them to the attendants and passengers sitting next to me. Sometimes people don’t know what to say, but other times they smile and nod and “get it”. They offer me extra comfort and attention while I’m on the plane. I love that! Another thing I learned—believe it or not—is that flying in First Class really helps. It’s less crowded, quieter, and more peaceful. I can get anything I need a little quicker, so overall it is much easier to relax. My mom laughed at me when I told her I learned this. She said, “Well, you are not going to be able to travel as often if you have to save up enough money for First Class.” To me, though, it’s worth it!

Within a few weeks of attending Wings for Autism, I made a real flight to visit my sister in South Dakota. I was a little nervous, but I did it. It was great. Then I went to Denver and Albuquerque. Recently, I traveled to Portland for a lesson with a famous musician. Then, for my birthday my parents gave me a trip to San Diego on Alaska Airlines. It was only for one day (because I am still practicing my hotel check-in skills and not quite ready to do an overnight solo), but I did enjoy a bus ride to downtown and lunch on the waterfront.

WingsI have now volunteered at several Wings for Autism events with the Arc. If you and your family come to the next Wings for Autism day, you will see me there, smiling and happy, ready to help you learn to fly. In the future, I would love to work in a job that contributes to everybody’s enjoyment of air travel. I can load bags, deliver parts, planes and cargo, or just help customers with special needs to enjoy their travel. Having studied Aviation Management in college (in addition to Music Performance), done internships at two airports, and knowing several people who work at SeaTac, I am ready to make a difference. I want other people with autism to feel comfortable with aviation, maybe even take flying lessons to visit smaller airports, not just giant ones. I would also love to somehow blend aviation and music to help people relax when traveling.

“Frequency of trials” is something important for autistic individuals to master new skills. The more we can practice handling a situation, the less frightening it will be. To me, this fact is exciting when I think of mastering travel—the more I do it, the better it gets. Travel is good for everybody. Now that I’ve graduated, it would be fun to start a travel club picking up where Wings for Autism day leaves off, to practice visiting hotels, taking cruises, and expanding my horizons. Oh, the places we’ll go!



Living Our Legacy: Family Members on Staff

IMG_0035In 1936, a group of parents came together to advocate on behalf of their children with developmental disabilities and started a movement that would change our community. Today, The Arc continues to be driven forward by family members who are dedicated to ensuring that their children, grandchildren, and siblings have the opportunity to live and thrive in King County. Many of our current staff, volunteers, and board members bring their personal experience as family members to the agency, ensuring that eighty years later, our legacy stays alive.

Cathy Murahashi, Rachel Nemhauser, and Marilyn Cooks each first came to The Arc as caregivers looking for advice. Now, all three are integral members of our Family Support and Systems Advocacy teams, working now as both family members and professionals in trying to help other families navigate the I/DD systems in King County.

In the mid-90’s, Cathy Murahashi joined an internet support group for parents caring for a child with Down syndrome. Seeking a community of like-minded moms, she connected with Jodi Reimer, another mom who was then the Parent to Parent coordinator at The Arc. Cathy became a Helping Parent and soon began supporting other parents when they had a new diagnosis. In 1999, Cathy met Margaret Lee Thompson, who encouraged Cathy to join the Parent Coalition and become involved with The Arc’s advocacy efforts in Olympia. A year later, Margaret Lee invited Cathy to join the King County Parent Coalition team as an assistant. Fifteen years later, Cathy remains a valued staff member, and now enjoys her current role as the Family Engagement Coordinator for the King County Parent and Family Coalition. When asked about why she has stayed with The Arc of King County for so long, Cathy stated simply, “I am fortunate to be paid to do what I love!”

In 2009, Rachel Nemhauser was referred to The Arc to locate support services for her youngest son, who has an undiagnosed developmental disability. The first person Rachel connected with was…Cathy! Soon after that first connection, Rachel also became a Helping Parent, and then became involved with a number of Arc programs as an active volunteer. Rachel ultimately joined the staff in 2015 as the Parent to Parent Coordinator, taking over the position that Cathy previously held.  Rachel noted, “I always wanted to be surrounded by a team of people who are as passionate about disability issues as I am, and The Arc is the perfect place to be”.

Marilyn Cooks also joined The Arc staff in 2015 as part of the Parent to Parent program team. Marilyn is the caregiver for her grandson who has an I/DD. She has the lived experience of raising a child with a disability: she knows about navigating the special education world, smoothly transitioning from high school to employment, and helping her grandson secure both a job coach and an independent living situation.  Armed with a wealth of knowledge about services from her previous work at DSHS as well as her personal experience navigating disability resources, Marilyn provides other caregivers with the insight and guidance they need to access services, while also relating to the very real concerns of the people who contact her.

The Arc believes that self-advocates and their caregivers are the disability community’s greatest asset. The expertise and personal experiences that these staff bring to The Arc informs our work, ensures that our recommendations are relevant, and keeps us connected to our grassroots origins. When someone calls The Arc looking for help, they know the person on the other end of the line really understands. Cathy, Rachel, Marilyn, and all of our other parents and self-advocates are helping The Arc truly LIVE OUR LEGACY! They will be featured presenters at the Open House and Annual Meeting on Saturday, January 23, sharing more of their story and their personal experiences.

This story is a part of our 2014-2015 Annual Community Report. To view the full report, click here! 

Christmas Eve at The Arc

Every year on Christmas Eve, our Supported Living participants join us at the office for a homecooked breakfast of pancakes and bacon. Can you smell it? It smells so good! Seriously mouth-watering!

I’m sure that some people come because of the tasty treats. But what really stands out for me at this annual tradition is the community of support and friendship that direct support professionals share with the people whom we serve. There is genuine laughter and good cheer all throughout the room as people enjoy each other’s company during this special time of the year.

Wherever you are during this holiday season, and whatever holiday you celebrate, our sincere wish for you is being part of a community of people who love, respect, and appreciate you. Happy holidays from everyone at The Arc of King County!


P.S. Thanks to the wonderful staff and volunteers who make the tasty breakfast, and special thanks to our friends from Bergelectric who made sure that guests had a special holiday gift!

26th Legislative Forum a Success

DD Legislative forum November 23 2015 Rep Senn

It was a dark and stormy night on the Monday before Thanksgiving, when more than 500 attendees made the 26th Annual DD Legislative Forum another HUGE success. County Executive Dow Constantine warmly greeted the standing room only crowd which was one of the biggest ones yet. We were grateful for everyone who attended, including the 17 amazing speakers who gave their personal reasons for legislators to act on behalf of people with intellectual and developmental disabilities. Their bravery was appreciated by the 22 legislators who joined us, and we know their tales of heartbreak and victory made an incredible impact on our lawmakers.

Although many of you could join us, we know that some missed it due to schedule conflicts, or maybe you were just held back because of the rainy traffic jams. Here is a recap of the big topics that we covered on the local legislative agenda that night:

  • Young children need early intervention services
  • Families need crisis respite and support services
  • Unserved and underserved need equitable access to services
  • Employment opportunities needed
  • Supported Living services needed

Thank you again to all of the legislators, families, staff and volunteers who came to the Doubletree Suites at Southcenter last month to make this forum a success. Now, on to advocacy days and the upcoming 60 day legislative session!


The Last of the Institutions – A Personal Reflection

Today’s blog is from Stacy Gillett, the executive director of The Arc of King County. She shares her personal thoughts about institutions for people with developmental disabilities.

StacyInstitutionA recent investigative series on King 5 talks about institutions for people with developmental disabilities in Washington. If you have not yet seen it, I encourage you to watch reports from Susannah Frame. The Arc of King County has taken a stand against institutions because our mission states that we believe everyone deserves to live, learn, work, and play in the community of their choice. When our society includes everyone, we all live a better life as a result.

Personally, I believe this to be true because I have seen what it is like first hand.  Many have heard me speak about my own connections to the disability community through my sister Colleen, but not everyone may know that my own family struggled with the choice of an institution.

Currently, I am co-guardian for my sister Colleen who is 51 years old and has a developmental disability. Colleen needs support in every aspect of her daily life.  She has behavioral challenges, psychiatric issues, needs daily medication management, help with personal care, communication support, help to buy groceries, assistance to get to her volunteer job, and support making everyday choices.

Colleen was raised in our family home until her mid-20s.  My mom fought hard for Colleen to experience all of the same milestones growing up that my other sister and I enjoyed.  She went to public school in the Lake Washington School District where she was “mainstreamed”, she rode the school bus and packed her own lunch.  She had a plan for employment when she left school and, at the time, it felt like her future held so much promise.

When Colleen aged out of school at 21, however, she sat at home, waiting for the school bus to come day after day, with no job support, no day program, no continuing education opportunities, and no hope.

This was the 1980s – a time of historic cuts and low funding.  Colleen’s sense of confidence, the skills she had worked so hard to gain in school, her independent capabilities and her mental health eroded when she had nowhere to be, with no sense of purpose.  My other sister and I moved out of the house to go to college and begin our young lives, and with no one home to help care for Colleen, she became increasingly isolated, depressed, and non-communicative within a few short years.

Colleen needed more than my mom could provide as a single working parent with no support.   When Colleen became dangerously unresponsive and completely dependent on others to care for her, my mom asked for help.  After many trips to hospital emergency rooms, Western State Hospital, and Harborview to beg for some sort of support, placement was offered at Fircrest.  I’ll never forget my mom’s stinging tears when she realized she had spent all those years keeping my sister home, raising her like she raised all of her children, only to have Colleen end up alone and in an institution. It is not where she belonged.

There are times in everyone’s life that, in hindsight, you realize are game changers.  In our family, my sister’s crisis eventually lead us to the home, job, and community connections that we had envisioned for her in high school, but it came at quite a high price – to my sister’s mental health; to my mom’s dignity as she begged for help; the wasted years of struggling to maintain my sister’s right to an education and to live with her family only to see her skills erode in a few short years; and to the state – with a $200,000 annual pricetag for the institutional care of someone who became much less functional when she left high school because she lacked support for employment or a life in her community.

The reality is that my sister didn’t need an institutional placement until the system failed her.  It failed to recognize that with a few low-cost/high-impact programs that support employment for high-school leavers, that offer community access programs for volunteer work and recreational activities, and respite and individual supports to families willing to continue caring for their family member, my sister wouldn’t have lost her skills, lost hope, and fallen into crisis.

Within three years of my sister’s arrival at Fircrest, this institution was the subject of a Department of Justice investigation, and as a result of multiple violations, it was ordered to downsize.  My sister was included in a group of individuals who were offered community residential services, and we took the option.  She has thrived living in the community ever since.

Now, she volunteers six hours a week at the local food bank, and she loves sorting new baby diapers into bags and handing them out to needy moms and families.  Just like the rest of us, she picked out what color of paint she wanted in her room, she helps decide what groceries to put on her shopping list, she has a cat, and she picks out what movie she wants to watch on a Saturday night.  That didn’t happen at Fircrest.  She is thriving among her family and friends in the community with a level of independence that is just right for her because of the availability of the federal Medicaid waiver program that allowed her to leave the institutional setting, because of a court decision called Olmstead that requires she live in a community setting if she chooses, and the support of employment programs that cultivated a job she does well and with pride.

Something has to change.  It is time for a revolution – that includes a revelation that institutional care is inappropriate for people with intellectual and developmental disabilities.

In a recent Harris poll described in the Shriver Report: Insight Into Intellectual and Disabilities in the 21st Century, more than 40% of the country said they do not personally know a person with an intellectual disability and 2 in 5 adults say they are not familiar with intellectual or developmental disability (never heard of it).  Only about 13% of Americans say they have a friend with an intellectual disability and less than 5% know what it is like to work with someone with an intellectual disability. That means that nearly half of our country continues to hold onto outdated views of people with intellectual and developmental disabilities, laced with fear and misunderstanding.

What the Shriver Report tells us is that inclusion works – that of the more than 50% of Americans who do know someone with an intellectual disability, they are significantly more informed, accepting and compassionate toward people with intellectual disabilities.  Exposure is a key indicator of American’s attitudes toward people with intellectual disabilities.  For those American’s who report not knowing someone with an intellectual disability, they cling to old judgements, dated stereotypes and confusion about people with intellectual disabilities.

Perhaps most sobering, 91% of Americans think some, most, or all people would give a child up for adoption or have an abortion if told the child would have an intellectual disability. This is a decision based on fear of being able to handle the situation emotionally, financially and physically.

I grew up seeing my mother fight for my sister’s civil rights—her right to an education and her human right to be seen as a valuable and important member of our family and community. I grew up being told, and being shown, that people with intellectual disabilities were capable and able beings who could not only beat our expectations, but surprisingly out-perform the rest of us when given the right supports, and who could teach us so many lessons about family unity, perseverance, courage, and love.

There are many challenges in the fragile system we have developed to support someone like my sister in the community.  What my sister has is exactly what we believe everyone with an intellectual and developmental disability deserves – the ability to live, learn, work, and play in the community, improving the quality of life for all of us.   But it is time to change a world where someone with an intellectual disability is forced into crisis in order to achieve it or never has the opportunity to make that choice.

Empathy, Autism and Solidarity


Today’s blog is from frequent guest blogger, Ivanova Smith. Ivanova is a self-advocate with a passion for social justice and she is a busy activist with strong opinions about the disability community. She recently began teaching at Highline College after completing her internship at The Arc of King County. 

Understanding other people’s emotions has always been a struggle for me. I don’t know how to respond to people who are distressed. This is very stressful to me.

The media and research has suggested that autistics can’t have empathy; I don’t think that is quite right. I feel we have trouble understanding what to do with empathy. If I see someone in pain it makes me shut down I can’t respond to it. Does that mean I have no empathy? I don’t think that is the case. I think we have empathy but we struggle processing what is happening and how we should respond. While I am shut down, I feel great sadness for the person. I think about how I wish I could be the one in pain instead. But the feeling is so intense I can’t process my reaction fast enough to do something.

When someone is angry with me it scares me and makes me want to run away. But I can’t always tell when someone is angry with me. This leaves me in constant fear that I do stuff wrong and I do not know it. If my husband does not talk to me for a couple of minutes, I get scared and ask him if I upset him. He always expresses confusion to this saying “No. Why would I be mad at you?” or he unintentionally raises his voice. It just hard to tell.

Another contributing factor is that I am face blind. I can’t reorganize people well so I have to remember them by their clothing.

I feel autistic people have been expected to regulate emotions when some of us can’t. There are a lot of times I can’t understand my emotions because I get upset at things that are typically not upsetting. Lots of times I simply don’t know how I feel. I can tell basic emotions but anything with complexity and I am lost. I have had meltdowns all my life.

People have tried so many methods to help me control them. The biggest suggestion people give to me is to try various breathing exercises. I’ve tried, but I still feel upset and the meltdown does not stop. I feel the medical community needs to listen to autistic adults on how they have found ways to cope. The best methods I have found include rocking and having my comfort buddy Chewy.

The behaviors autistic people do like rocking and other repetitive behaviors can be the only way we can regulate our emotions. There is an article that goes in detail about this. When I read it I was so excited because it actually gives reasons for stimming from a positive view. I hope the article will help others.


This new research makes me very happy because maybe it help figure out different ways to help autistics with these emotional struggles. Also it helps in the sense of educating people on the harm of stopping stimming behavior.

With all of the new research coming out about autism, one thing concerns me. I don’t think that autistics who can’t express empathy should be shamed. Lots of adult autistic advocates are saying that the lack of empathy in autism is a myth. For some this is true, but all autistic people can’t be expected to express empathy. Every autistic person is different. Some can express empathy, and some may have empathy but can’t express it. I struggle with social skills but I know some autistics can master the social rules with training or self-study. I hope nobody is left behind or is shamed for not being able to do something.

I am also concerned about these separations within the autistic community.  I have someone with autism shame another autistic online for struggling with social skills. This bothers me because it can make the autistic community hostile to autistics that don’t have social skills.  Forcing expectations on fellow autistics makes me feel very uncomfortable. Autistics struggling with empathy and understanding need to be respected and given support! We need understanding, not shame. I am happy for the autistics who gained social skills and understand emotions. I just hope they don’t look down on autistics who don’t share those abilities. We need to acknowledge that every autistic is different. Some autistics can go to elite universities and are able show great amount of social skills. The majority of autistics struggle to understand the basic social skills and were never given the chance to get into higher education.

For a long time in the autistic community, some parents of autistic children have said that self-advocates were too ‘high-functioning’ to understand struggle of their autistic child.  I did not understand why they felt this way. I thought that someone who is autistic would have more insight on being autistic then a non-autistic.  But now I think I understand what they meant. Because some autistics expect others autistics to have the same abilities, parents realized this wasn’t possible with all children. Every person is a different, so I don’t think it’s right to expect an autistic to be able to do something just because you able to do it.

I still do not support functioning labels but I do feel that the autistic community needs to make sure all autistics are respected and accepted, not just those who have advanced social skills or can understand emotions. I believe very strongly that autistic people should not live in fear of being shamed by fellow autistics. We get enough of that from other people. It breaks my heart to see shame on people with autism. This is what has made me feel cautious of autistic advocacy. I feel there is a lack of understanding about the different levels of support needed. The autistic advocacy community needs to deal with this problem before there is a split in the community. Everyone has to be part of the movement.

Additionally, I believe we need to stay connected to the intellectual/developmental disability community. I have seen recent blog posts blaming the hard aspects of autism on other conditions such as intellectual disability. Parent advocates don’t relate to autistic self-advocates because we are seen as higher functioning then their child who may be non-verbal and have struggles with toileting. The self-advocates were quick to blame it on intellectual disability. I do not agree with their response.  I don’t like how the intellectually disabled have be thrown under the bus over and over again. When I was young and still trying to figure out where I belonged, I related most with my peers with intellectual disabilities. When I found out I was autistic, I felt it meant I was part of that community. It made me so happy to start my advocacy and hang out with more people with I/DD. I know I am with my community.

Some people may argue because my IQ is in the learning disability range that I can’t relate with this community. But I look at history and just 50 years earlier I would have. When I saw that fellow autistics were distancing themselves from this community, it made me uncomfortable. I don’t want to split. I have been able to accept my autistic nature and the way I learn because of the intellectual/developmental disability community. I love all of my peers, and I feel intellectually disabled people need to be accepted and empowered just like what the autistic community wants. The entire community has important things to contribute to disability justice. Our communities need to stay together because we are more the same than different. We all want inclusion, not just some of us.