Wednesday, February 18, 2015

by David Maltman, Guest Contributor

I have found the articles posted to this blog too often demonstrate the challenges that individuals with developmental disabilities and their families experience in participating in the social, economic, cultural lives of their community. We all know that personal relationships and community networks are often the place to start when looking for a job or ways to better connect with neighbors and other members of our communities.

In response to this situation, the Developmental Disabilities Council (DDC) has crafted a project intended to assist individuals and their families be more involved and included in community activities.  Inclusion, we believe, results in relationships with other people outside of the DD Silo who share common interests. In turn, communities will learn to utilize the gifts, talents, and skills of all citizens.

The DDC is working with Friendship Adventures to provide small grants to promote inclusion and innovation in building relationships. The "micro-grants" range from $100 to $500 and can be used to purchase goods, services, or pay certain fees. The application is simple to complete.  The only catch is that the purpose for seeking the grant must involve and benefit Washington residents with developmental disabilities in an integrated setting—it really is that simple..

If you have an idea about an activity or event that will promote inclusion, go to the Micro-Grant website for information and an application at: http://www.waciim.org

The website explains who may submit an application, the award process, and how the micro-grants can be used to promote inclusion in the community. The website includes a tab for Frequently Asked Questions. Most ideas about ways to initiate or participate in community events or activities that create relationships between individuals with developmental disabilities and their families and their community, would be considered.

David Maltman, Policy Analyst 
Washington State Developmental Disabilities Council

PRINT IT!
Click here for a printable one-page fact sheet on Inclusion & Innovation Micro-Grants.

Friday, February 13, 2015

Unintentional Exclusion

by Charlene McCarty & Travis, Guest Contributors

Parenting is hard. Single parenting a child with developmental disabilities- even harder. Every child is unique and there are no “one fits all” solutions to parenting. You find yourself questioning every decision you make.

“Am I doing enough?"
"Am I doing too much?"
"What if this happens? What that doesn't happen?"
"Will this come back to haunt me later?”

But, at the end of the day you tell yourself you're doing the best you can, and you hope for the best. At least, that was my mind set on my journey with my son, Travis.

Travis was diagnosed with developmental disabilities when he was 4 years old. Communication and social interaction is one of his biggest challenges. He entered school with an IEP (Individual Education Plan), and it became immediately evident that he was not comfortable interacting with his peers or participating in group activities. The school and I agreed to let Travis integrate into the group at his own pace and not force interaction with his peers.

During his grade school years, the inability to manage his emotions caused frequent meltdowns if he was over-stimulated or placed in a chaotic environment. So, in what I thought was in the best interest of my son’s emotional well-being, I allowed him to be excluded in those types of situations. I would consult with his teachers before each event and come to a mutual agreement on whether Travis would benefit from participation or if it would cause undue stress.

Needless to say, he didn’t participate in many events such as field trips, assemblies, and school group activities. Was that the right decision? At the time, it felt right. Looking back, I’m not so sure.

As Travis continued on to Junior and High School, his social interactions did not improve much. I was learning more about inclusion and advocating for our child’s rights to be included, but I felt strongly that part of advocating for a child was respecting his right to make choices about his life.

I would encourage him to participate in social events, join groups or clubs, interact with his peers, but I also respected his decision of choosing not to do those things. On the few occasions that I insisted he participate in something against his will, with the hope that he would enjoy himself once he got there, did not work out that way. If he really did not want to participate, there was little we could do to change his mind.

Travis was slipping into the cracks of social exclusion unnoticed. Partly, I think, because of the type of person he is. He is a likeable, polite young man who is known by many. Everywhere he goes, people recognize and greet him and he always responds. But, that’s as far as it goes. Travis enjoys doing things with his family like going to the movies, attending plays, shopping at game stores, and eating out (a lot!). The key phrase there is “with his family."  Travis has been content to only have his family as his social network, and although that’s not a bad thing, it has allowed him to be unintentionally excluded with his peers. 

Travis will turn 20 in a few short weeks, and is in the final phase of transitioning from high school to adult life.  As I look back at his life and the decisions that were made along the way, I worry that the lack of a social network other than family is going to isolate him from engaging himself with his community.

The good news is, it’s never too late to change! Recognizing and acknowledging this now, we can develop a plan to help Travis be successful as be builds his future. Travis will have a team of dedicated people to help him through this process. Through the transition services at school, he is learning basic living skills, means of transportation and getting out into the community by volunteering or perhaps part time employment.

We hope to have a Person Centered Plan in the near future where all of Travis’s network (teachers and family, etc..) will be invited to brainstorm ideas and help build a better vision of who Travis is and what kind of life he would like to have. There will be timelines and goals that are realistic and achievable. The desired outcome is to instill confidence in Travis and give him something “real” to work towards.

Borrowing the concept of a quote from Al Condeluci that rings true for Travis: “The more you get to know him, the more you see his value."  Travis is also going to participate in a pilot project that The Arc of Grays Harbor is conducting called “intentional inclusion” to help build his social capital by connecting him with community members involved in things that Travis is interested in.

Although Travis may never have a large capacity social network, I feel confident that it will grow substantially in his future as an adult. He is beginning to understand the importance of having a social circle other than family and is working hard to learn how to build stronger communication and social skills.

Monday, January 12, 2015

Latino Strong: The New Voice of Advocacy

As the result of the Developmental Disabilities Council’s (DDC) ongoing efforts to provide outreach to minority communities, the Council is seeing some exciting growth in the participation of individuals from diverse ethnic backgrounds in its Local Leadership project.

Known as Partners in Policymaking in other states, the Local Leadership project is the DDC’s approach to developing leaders who create tangible impact on local communities, as well as state and federal governments.

The purpose of the project is to create a lasting base of individuals and parents who remain active advocates and change makers at the local and state level long after each local project runs its one-year course. The project has shown great success over the years, creating leaders who have moved into local and statewide positions of advocacy and policy development.

In 2012-2013, the King County Arc held classes for Latino, Somali, Asian and African American participants, who were all bi-lingual.  In 2014-2015, the Arc of Snohomish and Yakima counties conducted classes with all Latino members, some of whom were bi-lingual.  Materials were translated and interpreters utilized.

According to co-coordinator of the Snohomish group, Catalina Angel, “The Leadership training has been a platform for immigrant parents to gain advocacy skills and learn about the systems that support their children with disabilities.”

Snohomish County Leadership

This past month, the three Local Leadership groups attended an intensive on-site legislative training in Olympia, where two of the Snohomish groups' Latino legislators visited with the participants; Representative Luis Moscoso from the 1st district, and Representative Lillian Ortiz-Self from the 21st.

Yakima Leadership
(L-R) Jesus Ramos (Sunnyside), Joel Tovar (Mabton) and Itza Reyes (Toppenish)

"The participants in our Yakima County program are excited to polish their skills in advocacy and become leaders in our local Hispanic community on I/DD issues," says Linda Fox, coordinator of the Yakima Leadership program. "Itza [Reyes] reminds us that 'disability is in all cultures', and looks forward to developing cultural bridges that connect all citizens and strengthens collaboration on the I/DD issues we face.

With the increasing push toward ethnic outreach, the Council hopes to see more individuals and families empowered to make changes that include their values and vision for the community.

Thursday, December 11, 2014

The Many Paths to Inclusion

by Betsy McAlister, Guest Contributor

The realization that something is unfair comes in many forms, and often during unexpected moments. Our moment came last year when my older daughter was a senior in high school. She had tears in her eyes after listening to me explain that her freshman sister was being asked to drop choir due to vague reasons that it might be too difficult.

Her sister, born with developmental disabilities, had been in choir since elementary school, and we thought her participation in the high school choir was a given. And yet discrimination and the difficulties of inclusion were unfolding, once again, in our family life.

As a parent, there have been many times I have faced a teacher, neighbor, friend or stranger who does not understand inclusion; however, my mind kept questioning how my younger daughter could enjoy the benefits of a music program if she wasn’t even in the class.

The reality is, physical presence is the first step to inclusion. If my daughter is not even at school events, public places or family gatherings how can she participate? Where is her dignity of risk? Shouldn’t high school, for her, be about new experiences and classes and not about exclusion and imposed limits?

We were faced with choices: educate, push, pause, agree or disagree. In this instance, my mandate from my younger daughter was clear: it was time to push.  She repeatedly made it clear to me she wanted to stay in her choir class, and she needed help in advocating. This opportunity was not about a power struggle between her teacher and me but about my daughter’s passion for music and her goals in high school.

As my husband and I strategized and attended numerous meetings, we agreed that we had to do what is really hard to do: we listened. We went to every meeting requested, and we listened...again and again and again. We listened when the teacher mentioned that my daughter’s presence was not fair to other students because it was a performance choir. It was hard to listen to that, but we did.

We engaged our daughter in the process, made our expectations clear and found her additional support for the class. We refused to agree to her being transferred out of choir, but we also came to the table with ideas, openness and support. And through the process we found her choir teacher became willing to work with us and offered many great suggestions and ideas.

This September, at a fall choir performance, my husband and I listened to a few choir members on stage share why they loved choir. Each mentioned the beautiful music first thing in the morning, the friendships, the learning, and the caring atmosphere of their “choir family.”  One student gushed, “Choir is just the best.”

My husband smiled at me as we understood those same experiences were just what we hoped our daughter would enjoy. The path was difficult, but there she stood in a beautiful dress on stage singing.

Friday, December 5, 2014

Alexa's Story: Why Not Me?

Throughout her childhood, whenever Alexa’s parents talked about her younger sisters trying something new, she would ask, “Why not me?” It was hard to accept, but Alexa’s mother never really had a good answer. So, as Alexa pushed the boundaries, they felt their way through the challenges of creating as typical a life as possible.

As they got older, and the topic of getting jobs and moving out became a conversation with her sisters, Alexa once again asked, “Why not me?” After all, she was the big sister. Her parents agreed; they shared the same expectation of work and a life outside the family home for all their children. For Alexa, as always, it would take extra help and some trial and error.

With help from her family and paid services, Alexa found employment and an apartment that she shared with her grandmother. Later, when her grandmother moved out, Alexa and her family advertised and interviewed a new roommate without disabilities and closer to Alexa’s age.

Sharing her home with a peer that has an active social life, including online dating has had Alexa asking herself, “Why not me?” She’s had a boyfriend, but being around her roommate made her realize that she was missing something.

“In real life, it is hard,” she says, sipping her iced tea at a local coffee shop and teasing her mom about being a "drama queen" over the topic of dating. “I’m a little bit picky. The guy has to be cute, but also nice and kind.”

She says that it was her idea to try online dating. Her mom found a site that’s for people with disabilities that they both felt comfortable with. “It’s like email,” Alexa explains. “Most of them live on the other side of the country.”

When asked how she deals with her mother’s concerns, Alexa says, “My mom was more like the worry wort. So, basically, I decided I wasn’t going to tell her everything about it.”

“Just like her sisters,” her mother says. “Nobody tells me anything.” Alexa beams and laughs at the compliment.

She is proud of her independence. “I’m more mature now. I take it serious. I do want a love life. It makes me feel lonely [not to have one]. I want a guy who will understand no sex and no kids. I need a guy to respect that and not take advantage of me—online or offline. I’ve always felt that way.”

When asked where she gets this wisdom from, she says, “Myself.”

Her mother perks up. “Maybe your family had something to do with the way you turned out?”

“No. I don’t think so.”

The laughter and banter continue. Alexa says she’s not as involved with the dating site as she was at first. “If I check messages, it’s only on the weekends.”

Her patience is as strong as her perseverance. As she reflects on dating and finding someone to be in her life, she recalls a movie she’d seen, The Great Gatsby, starring Leonardo DiCaprio. “Leo waited a long time for her. I just decided to wait for a time the way he’s waiting.”

When it comes to finding that special someone, Alexa makes it clear that she's no different than anyone else.

Friday, November 28, 2014

The Friendship Dilemma: Finding Peer Activities

Continuing our series on friendship, the following thoughts on making friends are offered by a parent whose son has significant disabilities.


The topic of friendship for my son poses an interesting discussion. He is non-verbal and on the lower functioning end of the developmental spectrum.

Truthfully, and sadly, I haven't had making friendships as a goal for my son. He requires a caregiver to be with him where ever he goes. Oftentimes logistics, lack of energy, and/or lack of time are extra hurdles that get to be too much. My focus has been on finding activities that he would enjoy, or exist as a part of life.

Two way communication is the beginning of typical friendships and also what sustains and nurtures it. When that doesn't exist, then being in the presence of another for a lengthy and frequent amount of time is the only way to establish a friendship/relationship. 

Currently, my son attends a day program all week, and a bowling peer group monthly, and I consider his peers there to be his friends, although they have rarely gotten together outside of the respective events. Outside of these activities, his best friends are his siblings.

Thursday, November 20, 2014

Friendship: Expecting the Best, Preparing for the Challenges

by Susan Atkins, Guest Contributor

Helping our kids make (and keep) friends is a huge challenge. There never seems to be anyone who can help, or any easy answers; however, over the years, a few tips I picked up along the way helped me with all three of our girls, especially Alexa, who was born with Down syndrome. 

Tip #1: Have High Expectations and Hope
When your child is different—diagnosed with a disability—it is more difficult to figure out how to help them make friends, especially if they don’t have language and social skills until a later age. Alexa was one of those kids. She always had a great smile, but did not have the language to interact much with other kids in those early years. I had to hope and expect that with help—from her family, the neighbors, and her school staff—she would make some friends.

Tip #2: Provide or Create Access to Other Kids/Inclusion
Someone told me “you have to have access” to make friends. You have to be in class, at church, in the neighborhood—not home sick all the time, not in the house, not in a special ed class all day. Other kids have to spend time with you to get to know you before they will be your friend. I also felt that you have to be around other kids who are talking and acting socially appropriate if you want your child to learn those skills.

Alexa was a watcher and would imitate what the other kids did or said. I wanted her included as much as possible, which was often not easy for the schools. But it just felt right. I wanted her to be part of our society, not on the outside. I also wanted the other kids to get to know Alexa and find out she was "more alike than different.”

Once in school, Alexa had a Circle of Friend’s group every year. Circle of Friends is a group that’s facilitated by special education staff. Usually we would get 6-7 kids (without disabilities) from a class who would come.

The special ed teacher would facilitate the lunch group once a week. I used to buy pizza once a month for the group and stop in and eat with them to get to know the other kids.I also tried to get to know the other kid’s parents as they were the ones I had to “sell on” letting Alexa come over to their house or they come to ours. Once she was in high school the “peer tutor group” took over and ran the Circle. It was great. They planned everything, and even took the kids off campus to movies, out to eat, etc.

Another way to provide or create access to other kids is to make sure that your child is included in the first and last periods of the day at least. Those are the important times for kids get to know one another, as they listen to announcements, hang up their coats and back packs.  And make sure your child is “part-of” a regular classroom, not just included at lunch or recess. Again, you have to have Access and Inclusion to make friends.

Look for non-specialized programs and groups for your child to join. Girl Scouts and Camp Fire and Boy Scouts can be great inclusive groups for your child. Alexa was in a Girl Scout group in grade school. Later, she went on to join the Choir and also was in ASB and Leadership Class. Another parent and I pretty much helped plan and bought all the supplies.

Tip #3: Make Your House a Really Fun Place for Other Kids
Role play and talk about “fit in” behaviors at every age: not hugging the kids, just saying hi, not standing too close or talking about or doing “too personal of things.” Age appropriate behaviors: dress like the other kids, watch the same movies, listen to the same music, play the same computer games, read or listen on tape to the same books, be able to play on the playground with them. We needed to give Alexa things she could talk about and do with other kids at every age that they could enjoy together.

Tip #4: Network and Get Support
Make sure that you get the support you need from other parents. Join Parent to Parent and other support groups. Take time for yourself and get away with your partner/spouse.  I needed a life outside the disability world. And many of these tips I learned from other parents before I tried them out on Alexa and her sisters.

Today, Alexa is all grown up, working and living on her own (with support). Things are not perfect, of course. She would like to find a “guy friend” to be best friends with. We are still working on that, as she wants that in her life. Facebook has been a great way for her to keep up with her friends and she really enjoys talking with them that way.

If I can be of any help with this please email me, Susan Atkins, at: Statep2p(at)earthlink(dot)net