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!

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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

EmpathyDoc

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.

http://www.salon.com/2015/08/16/we_have_autism_all_wrong_the_radical_new_approach_we_need_to_understand_and_treat_it

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.

A Role Model Against Bullying

Eric Matthes knows that with great power comes great responsibility.
Eric Matthes knows that with great power comes great responsibility.

“Sticks and stones may break my bones but names will never hurt me.”

We often hear this rhyme chanted during recess at school, but the reality is much different. In fact, a scraped knee will often heal much faster than the verbal jabs that kids use to taunt each other. Bullying affects many children, but people with disabilities seem to be targeted more often.  That was the case for Eric Matthes, who is an outreach and advocacy coordinator at The Arc of King County. As schools headed back to session this fall, we sat down with Eric to talk about those memories of being bullied.

For Eric, the bullying began in kindergarten. He told me, “I remember kids calling me a retard and it hurt. I didn’t know it was a derogatory term then, but I could tell they didn’t say it to be nice”. Eric learned that some people would be mean, but he expected his friends to stand up for him during these moments. Unfortunately, they ignored the bullies who would sometimes shove Eric while taunting him with names. His friends just walked by as if nothing was happening.

Eric wished that his friends would have said something so he didn’t feel so alone. Eventually, he started to isolate himself. He didn’t want to keep getting knocked down – literally and figuratively. He’s embarrassed to admit that he even turned into a bit of a bully himself. He wanted to switch places to see what it felt like to have the power and be on the other side for once. Eric said, “it didn’t feel like me at all. It just made me sad and angry.” In those moments, he thought about a favorite hero: Spiderman. “With great power comes great responsibility.”

Now, he stands up to bullies. When he used to work at a movie theatre, he remembers the day that two teen boys came in with a girl on crutches. They made her carry the popcorn and the movie tickets, and they even called her the R-word. As the usher, Eric had to tear their tickets to let them into the theatre, but he decided that the boys needed to understand that what they were doing was bad. He said something to them in the most professional way possible. Although they didn’t respond, Eric is certain that the girl had to feel better knowing that someone stood up for her.

Eric noted that sometimes we may find that our own family and our closest friends can also be bullies and say things that hurt us very much. However, because of Eric’s work as an advocate, he has done a lot to make a difference for people with disabilities. Part of this work includes speaking at public gatherings where sometimes his family members are present to watch him in action. Eric spoke at The Arc’s annual meeting in 2014, and he received a standing ovation from his family, even the ones who have been challenged to end their hurtful remarks. Now they tell him how proud they are of him.

Eric has a lot to be proud of himself. He shares his story for audiences all over the country, and he invites the audience to share their experiences as well. On numerous occasions, people come up to him after presentations and tell him that they don’t feel alone anymore. Other people have lived through being bullied are able to do great things as an adult.

Spiderman was right. With great power comes great responsibility, and Eric is happy to use his power to be a role model for others.

Bullying: End the Cycle

This is the second installment about bullying and how members of The Arc of King County have dealt with a variety of situations. This month, one of our long-time interns, Al Suarez, shared his experiences. While each of our stories highlight the challenges, there are not always easy solutions. As our children are going back to school, we encourage our community to openly talk about this problem, to not only create awareness, but to also provide a safe space for sharing ideas and strategies.

Al SuarezMeet Al Suarez. He’s a lot like other 22 year olds you might meet. He lives with his Mom. Enjoys playing games like the Fallout Series, Half-Life, and Hearthstone where he’s legend ranked.

His encyclopedia of mind will amaze you. It’s full of video game history. Comic book knowledge. And humor that will have you laughing so hard you cry. But there’s something a little different.

Al was diagnosed at the age of five. His life drastically changed with one word – autism. It became obvious that he was, well – different.

“It first started with my dad and continued with my brother. My autism diagnosis scared my father. I was no longer normal in his eyes. And this only encouraged my brother.”

Unfortunately, bullying started at a young age for Al. First at home, then at school.

“At school I was bullied by my peers and teachers. I quickly started butting heads with the teachers. And in turn, became a bully myself. The only way I could combat the emotional pain was to physically fight back. It was my only sense of power.”

This was a nasty cycle that eventually led to Al leaving his first elementary school and moving to a private school more adept at supporting Al’s education.

“My tendency to bully and get into trouble continued with this new school and right into middle school. It wasn’t until seventh grade that I started to think through the emotional pain and the bullying cycle. I realized that I could stop the cycle. It takes two to bully. We’re both in pain. I wanted to stop that process. So I removed myself from it.

I haven’t fully recovered through the experiences in my life. I’m still working through them. But the upside is that I’ve ended the cycle. I see my role. The role of others. And I have decided I don’t want any part of it.”

Instead Al has taken to writing jokes on his blog Groaners by Al, is an active member on a softball Special Olympics team, and is a new member of a Toastmasters Club. By connecting with others in not only the disability community, but in King County, Al has found friends who accept and enjoy his differences.

Follow Al on Twitter ash12364 and his blog, http://lolgroaners.blogspot.com/.