Assistive Technology for Behavioral and Emotional Health

Printable Version

Autistics can be successful the way we are. We just have a different style brain and learning style. Video games are a great way for autistic people to learn how play with others. I learned turn-taking by playing video games with my sister. I have had hard time being social when I can’t be myself. When I was able to be myself, I became more social and started liking being around people. 

—Ivanova Smith, Advocate

Thanks to assistive technology (AT), opportunities for improving communication and relationships are expanding for children with social/emotional challenges.

There are thousands of devices and programs (apps) designed to aid communication, teach life skills, improve academic and social learning, and reduce frustrations that can lead to destructive behaviors. Games, in particular, are a great way to engage children with others and the world around them.

We’ve listed a few popular apps below, as well as links to more listings and AT funding resources. No one app or device fits all, so be sure to research and ask around.

Popular Apps

Camp Discovery (FREE)
Developed by the Center for Autism and Related Disorders (CARD), Camp Discovery is a suite of games that create fun learning opportunities for children with autism.

First Then Visual Schedule ($9.99-$14.99)
Helps children use and follow schedules. Let your child choose possible rewards for completed activities.

Learn with Rufus: Feelings and Emotions ($4.99)
Helps children learn the facial expressions that correspond to feelings and emotions.

Meet Heckerty (FREE)
Heckerty finds the world confusing and makes mistakes (as we all do). Teaches reading and vocabulary, inclusiveness, caring and loyalty.

Proloquo2Go ($249.99)
Symbol-supported communication app to promote language development and grow communication skills. This is a popular app in schools, but is great for all ages. Training costs extra (see funding resources below).

For more comprehensive listings, visit one of the following sites:
Bridging Apps
Closing the Gap
Washington Assistive Technology Act Program

Funding Resources

Developmental Disabilities Administration (DDA)
The Children’s In-Home Intensive Behavior Support and Individual & Family Services Program include assistive technology as a covered service.

Community First Choice (CFC)
A new program for individuals eligible for personal care through DDA or Home & Community Services (HCS). Talk to your DDA case manager about AT funding through CFC.

School District
Assistive technology & training can be included in a student’s IEP.  If you feel your child could benefit from assistive technology to improve his/her learning, ask for an assessment.

Washington Access Fund
Low interest loans and matched savings accounts for low-income households.
Washington Assistive Technology Act Program
Information, referrals, training and device loans.

ROADS to Financial Independence

Prepared by Washington Access Fund

Are you a person with a disability who is working or interested in exploring employment? If  you're interested in making the most of your earnings or potential earnings, Roads to Financial Independence may be for you.

Last month we announced a new financial capabilty program called ROADS. We are proud to be part of this national initiative aimed at improving the financial well-being and economic security of individuals with disabilities who are currently working or interested in exploring employment.

Are you interested in learning the following?

• How to prepare a monthly, livable budget
• What is a credit score and how to improve it
• Methods to decrease debt
• Methods to increase savings
• How to set and achieve personal financial goals
• How to protect against identity theft
• Independent living skills such as paying rent, paying utilities, and how to keep track of monthly  income and expenses
• Banking methods such as check writing, using debit cards, and development of savings goals

At the heart of the program is a commitment to financial empowerment for persons with disabilities. Services will include a Financial Wellbeing Assessment, financial education classes, one-on-one financial coaching, reviewing credit scores, SSI/SSDI benefits counseling, maximizing employer benefits and more.

Contact Conrad Reynoldson, Financial Stability Project Coordinator at the Washington Access Fund, to schedule an in-person or phone meeting to complete a financial well-being assessment and learn more about your financial needs.

Get Connected for the Summer

Printable Bulletin (pdf)

Summer can be an isolating time because we no longer have school to anchor us to the community. It can feel like we’re all of a sudden left on our own and are solely responsible for the care of our (not so easy) children. It’s so important for both parents and kids to stay connected over the summer. Check local community calendars for meetups and other social opportunities. They’re out there! —Rachel Nemhauser (Parent to Parent, The Arc of King County)

If you haven’t had the time or opportunity to locate summer activities for your son or daughter, below are a list of options and avenues to explore.

Some require more planning than others, but not all. Don’t rule out events that are for the whole community. There are lots activities and events that everyone can enjoy. Sometimes, showing up helps open doors for others with similar accessibility and accommodation needs.

Community Centers and YMCA
Craft classes, yoga, cooking, music, swimming, arts, and special events are often low cost and easy to join.

Libraries
Not only do libraries host free events and story times, but they are a great resource for finding out what else is going on in the community.

Local Parks and Recreation
City and county recreation programs provide inclusive opportunities for children and adults of all abilities, as well as specialized programs. In addition to classes, community events such as music in the park are free and don’t require advance sign up. Check your local paper or community notices for times and locations.

Outdoors for All (located in Seattle)
Adaptive and therapeutic recreation for children and adults with disabilities. Visit: outdoorsforall.org

Service Organizations
Non-profit community groups, such as Elks Club, Lions Club, Kiwanis, Easter Seals, as well as many faith organizations, have programs and activities to benefit children and adults with disabilities.

Summer Camp
Center for Children with Special Needs has a statewide directory of camps, including tips for parents on what to expect and how to prepare. Seattle Children's Hospital Center for Children with Special Health Care Needs has a list of camps.

Trips, Inc.
All inclusive vacation packages for individuals age 16 and older.

Parent Groups
One of the best ways to find out what’s available in your area is to connect with other parents and families.
Autism Society
Local Arcs
Fathers Network
Parent to Parent

Crucial Connection by Rachel Nemhauser

The first time I went out to dinner with a group of parents who have children with disabilities I was actually surprised to notice the moms were smiling and laughing.

After three draining, difficult, traumatizing years of raising Nate I had assumed my days of silliness, fun and friendship were officially over. I imagined my future held only sad, stressful, desperate get-togethers with other sad, stressed out, desperate parents like me. Seeing that I might smile and laugh with friends again - that I could laugh at all with a child with a disability at home – pretty much changed everything.

For three years Nate’s delays had slowly revealed themselves, one after another, like ants from a hill. First he was late to crawl, then to walk, then to talk. His play skills were behind. His adaptive skills weren’t emerging. His behavior and social interactions were challenging. There was no name for what he had and no explanation for his delays so I spent three denial-filled years trying desperately to believe he would catch up. I was not the parent of a child with special needs, I told myself daily. I’m not meant to be this. I don’t want to do this. And since I was determined to not be the parent of a special needs child, it was obvious I didn’t need the support that actual special needs moms needed. I didn’t need to connect with other moms and I didn’t need help because this was temporary.

Except it wasn’t temporary, and Nate never caught up. After three years I finally came to some level of acceptance and admitted to myself that I needed support. Thanks to an invitation from a friend, I decided to attend a Mom’s Night Out with a group of moms of children with disabilities. Expecting a prolonged venting-session complete with whining, tears and miserable desperation, I was surprised to find a group of moms who, like me, were excited to be out to dinner with other grownups! They were cracking jokes, bragging about their kids, and giving advice about behavior problems. They were updating each other on life events, medical procedures and marriage woes. They were recommending good doctors and dentists, and even hairdressers familiar with working with our extra-wiggly kids.

That night I shared the most exciting news in my world: At three years old Nate had recently said “mama” for the first time. To a group of moms of typical kids this is happy news, if not a little surprising. To this group, it was time to celebrate. They understood what “mama” means when you’ve waited three years to hear it. They cheered me on and celebrated Nate’s accomplishments as only they could. In short, they “got it” and it felt so good.

From then on connecting with other parents became crucial for me. I needed to check in regularly with this army of other parents. They were part of my new life and were where I turned to find the support, insight, perspective, acceptance and humor that I couldn’t always get from the rest of the world. I needed to learn from those more experienced than me, and eventually even pass that support on to others.

Today I no longer resent thinking of myself as a parent of a child with a disability. I don’t know if I was meant to do this, but I do know that I can do it. And I’m grateful for those laughing moms from so many years ago who showed me with their smiles that my future would still be joyful and full of laughter.

Rachel is the coordinator of Parent to Parent at the Arc of King County. Parent to Parent helps connect parents to resources, information, and most importantly, other parents. She can be reached at Rnemhauser@arcofkingcounty.org or 206-829-7046 for more information.

Removing Barriers to Learning

Printable Version

Students on the autism spectrum and other disabilities may have barriers to learning that you can help identify through changes in behavior at home. Learn the signs and steps to make sure your child is getting the supports and services needed.

Signs to look for that indicate your child is having trouble learning:

• An escalation of destructive behaviors.
• Suspension from school.
• Extra hours spent helping your child with homework with little or no progress.
• Emotional meltdowns that happen as soon as your child returns home from school.

Document What You See
Any sign that your child is not learning is data that can be gathered to show that your child needs help. The school may say they don’t see these things, but you know your child and what is disrupting his/her ability to learn and participate at school.

Ask for an Evaluation
Evaluations can identify services and accommodations to help your child learn and participate in school. There are many types of evaluations besides an initial evaluation. Here are a few examples of ones to ask for:

• Sensory. Indicators include an increase in challenging behaviors related to the environment (sounds, movement, touch, colors).
• Social Emotional. Indicators include: lack of peer interaction with classmates; lack of understanding social cues; not developing friendships.
• Academic. Indicators include problems with one or more subject areas (math, reading, language arts, etc.)

Evaluations can be requested whenever you see that a disability-related need is not being met or hasn’t had adequate evaluation.

Address Service/Support Needs in the IEP or Section 504 Plan
Based on evaluations and/or your observations, services to ask for may include: speech, language and occupational therapy, physical therapy, counseling services, and transportation.

IDEA AND SECTION 405: CHILD FIND

Child Find requires that school districts locate and serve all children with disabilities in their jurisdiction, under Section 504 of the Rehabilitation Act of 1973 and IDEA. 

IDEA has specific regulations regarding time frames, parental participation, and formal paperwork requirements, including an annual IEP that addresses support and service needs. Students who are not eligible under IDEA may still be eligible for services under Section 504, which has broader eligibility criteria.

Section 504, as with IDEA, grants students the right to a Free and Appropriate Public Education (FAPE). A student does not have to go through a “special education” evaluation process before being referred to Section 504. If a student has a disability which impacts their ability to benefit from or access programs or activities in school, an evaluation under Section 504 must take place. Most districts follow IDEA processes to comply with Section 504, but may have separate timelines and procedures.

IDEA and Section 504 both require educational plans to address a student’s support and service needs.

TO REQUEST AN INITIAL EVALUATION
If you would like your child to be evaluated for special education and/or Section 504, clearly state your concerns and request an evaluation in writing to the school psychologist.

ADDITIONAL RESOURCES
PAVE (Partnerships for Action. Voices for Empowerment.)
Parent to Parent (P2P)
Office of the Education Ombudsman (OEO)

AT&T Connect Ability Challenge

By Connect Ability

Call for Volunteer Feedback

Connect Ability is a three‐month AT&T global design competition for developers to leverage everyday technologies to create mobile and assistive technology solutions for people with disabilities. 

The challenge aims to accelerate innovation of smartphone-­‐based assistive technologies, and rewards developers for engaging people with disabilities to imagine, create and test new solutions. 

To ensure developers address tangible needs, AT&T, together with the ABILITY Lab at New York University, recruited four volunteers to describe on camera their lives with disabilities and their vision for technology solutions— these compelling two-­‐minute stories are directed at an audience of engineers and makers. Please see one for yourself.

Connect Ability’s four NYU volunteers are among several tech-­‐savvy people with disabilities who will host one-­‐on-­‐one virtual and in-­‐person meetings with developers to provide feedback on technological works-­‐in-­‐progress on track to be submitted before the June 24th deadline. These “collaboration sessions” will take place during the first week of June.

Do you know people with disabilities who might be interested in volunteering?

Individuals: 
AT&T and the Connect Ability team will help individuals interested in volunteering use their Skype or phone to meet a developer and provide feedback during a pre-­‐scheduled session. In most cases, developers will describe their ideas or prototype during the collaboration session. Some developers may ship a phone in advance for a volunteer to use an app in real-­‐time or simply email a link for the volunteer to download and test a solution on their own. The collaborations sessions will run approximately 20-­‐minutes and will be facilitated by a Connect Ability competition organizer. AT&T will provide volunteers with orientation prior to meeting.

Groups and team events: 
Organizations home to three or more people with disabilities interested in volunteering to give feedback can contact AT&T about hosting a “collaboration workshop” that consists of a presentation by AT&T on assistive and mobile technologies, and confidential one-­‐on-­‐one break-­‐out sessions with people with disabilities volunteering to give live feedback. Like the individual sessions, feedback will be provided over Skype or phone, and may include prototype technologies provided in advance. AT&T will structure, facilitate and produce group events. 

To learn more, contact Neil Giacobbi, AT&T Executive Director for Public Affairs at or 212-­‐803-­‐2626.

Enrollments to Open Soon in Key DDA Programs: Part Two

Click here for a printable fact sheet of Part Two

The 6 Steps of Transitioning to New Programs

The Developmental Disabilities Administration (DDA) is beginning the process of transitioning to two new programs: Individual & Family Services (IFS) waiver and Community First Choice (CFC). Before the new programs take effect and enrollments begin for thousands who have been waiting for services, a few things have to happen first:

1. Federal Approval
The federal government must approve our state’s application for an Individual & Family Services (IFS) waiver, as well as the Community First Choice (CFC). If this happens (and it looks like it will), the transition will begin in May of this year for IFS and July for CFC.

2. DDA Transitions to New Programs
IFS: Existing IFS recipients will be transitioned at their annual assessment or earlier if they are already eligible for SSI. New enrollments will be added beginning May 2015.
CFC: Transitioning from personal care to CFC will happen automatically on July 1st. 

3. DDA Goes Through Service Request List
Individuals who have requested IFS services, but who are not receiving it (aka, on the wait list), will be contacted by DDA. Individuals who have not yet requested IFS or other waiver services can contact DDA to request services. 

4. Assessment for Services & Service Planning
An assessment will determine the amount of service. During the person-centered services planning assessment meeting, case managers will discuss available supports and work with individuals to identify which available programs and services will best meet her/his needs (such as respite, personal care, assistive devices, behavior support, skills acquisition, specialized medical equipment, skilled nursing services, etc.)

5. Waiver Eligibility Determination
A determination of functional and financial eligibility for the waiver will take place. DDA will send waiver eligibility paperwork to individuals who are approved for Basic Plus or IFS Waivers.  It typically takes about 60 days for a client to be active on a waiver after submitting this paperwork. NOTE: Because it’s a waiver program, the parent’s income for minors is waived. Only the individual’s income is considered. 

6. Services are Approved
Once an individual is approved for either the IFS waiver or the state CFC personal care plan, case managers will work with individuals and families to identify providers and/or services needed as quickly as possible.

SSP: A Cash Benefit Alternative to Individual & Family Services

Printable Version

One of the lesser known programs at DDA is a cash benefit alternative to Individual & Family Services. It’s called SSP (State Supplementary Payment) in lieu of IFS. For many, it’s a great way to pay for services and supports without being limited to approved services and contracted providers. To be eligible for SSP in lieu of IFS, an individual must be:

• a client of DDA;
• income-eligible for SSI; and,
• eligible for Individual & Family Services.

SSP Q&A

How Is SSP the Same As IFS?
In addition to having the same functional eligibility requirements (including living in the family home), SSP has the same funding levels as IFS. The amount of funding is based on assessed need.

How Is SSP Different Than IFS?
The monthly benefit is delivered in the form of a monthly payment, either by paper check or direct deposit. No receipts or reporting to DDA are required. The money is for the benefit of the individual’s needs beyond what SSI pays for. In this way, it’s more flexible and easier to use than the IFS waiver program, which is limited to contract services only and does not cover reimbursements. 

Does SSP Affect Other Benefits I receive?
It should not impact the client’s SSI amount, but it could impact food benefits because the Community Services Office takes that resource into consideration. Clients and their families should always include this unearned income whenever they are asked about the resources available to them.

Can I Move from IFS to SSP?
Yes, as long as s/he is income eligible and there is capacity on the program (i.e. funding is available). DDA currently has capacity on SSP, but funding is always subject to change. Once SSP enrollment is filled, funding will only be available as other clients leave the program. Clients wanting to switch from IFS to SSP can request to do so at their annual assessment.

Can I Move from SSP to IFS?
Yes, if there are enrollment openings in IFS (i.e., funding is available). Right now, as thousands of enrollments are about to open up in IFS, being able to switch from SSP to IFS is possible. Once enrollment is filled, there is no guarantee that this will always be the case. Clients wanting to switch from SSP to IFS can request to do so at their annual assessment.

Can I Stay on the State-Only IFS Program?
Everyone who is currently on the state-only program will be transitioned to the federal IFS waiver at their annual assessment. A very small number of individuals (those who are ineligible for the IFS waiver program) will remain on the state-only program. If you are income-eligible for SSI, then the SSP program will give you the flexibility (and more) of the state-only program that is being phased out. 

Enrollments to Open Soon in Key DDA Programs: Part One

Click here for a printable fact sheet

What to Expect

We’ve been talking about this for close to a year, and it’s almost here: several thousand new enrollments will open for individuals on the No Paid Services Caseload. A couple of program changes are taking place that make this possible. Each has a different process and timeline, but both are likely to affect most individuals who are applying for these new programs.

Individual and Family Services (IFS)
Beginning May, 2015, IFS is moving to a federal waiver, which brings in federal funding to double the program’s enrollment. It also comes with more regulations and less flexibility than the existing IFS program, but will basically offer the same type of services, plus a few more. Clients who transition to the IFS Waiver will receive Medicaid coverage in addition to any other insurance they already receive.

Personal Care & Community First Choice (CFC)
By the end of uly, 2015, personal care services are moving into a program that includes additional services to enhance independence, such as assistive technology and skills acquisition. The new program is called Community First Choice. A refinancing of the current personal care program brings in new federal funding that will add capacity to DDA’s Basic Plus waiver and the new planned Individual and Family Services waiver.
 

What to Do if You’re on the No Paid Services Caseload

Start Planning
My Life Plan, a new online tool created by the DDC and The Arc of Washington State, can help you start thinking about goals and support needs at home, school, work, and in the community. As enrollments open at DDA, you’ll be ready to see where services might fit into life’s bigger picture, making sure your son/daughter’s interests, skills, and needs are at the forefront.  Begin your journey at My Life Plan.

Raise Your Hand for Services
If you are not on a wait list for DDA services, call the DDA NPS caseload number in your region and request the service you feel best meets your son/daughter’s needs. For service descriptions, visit DDA's website.

Toll-Free No Paid Services Caseload Numbers:

Region 1
Spokane: 800-319-7116
Yakima:  866-715-3646

Region 2
Seattle: 800-974-4428
Everett: 800-567-5582

Region 3
Tacoma: 800-735-6740
Olympia: 888-707-1202

Social Emotional Learning: Building Blocks of Success

Click here for a printable fact sheet on this topic (scroll down to April 2015)

Social Emotional Learning (SEL) is helping students gain skills to manage their emotions, communicate, and resolve conflicts. SEL benefits all children at any age, including infants and toddlers; however, students struggling with behavioral and/or mental health issues can especially benefit from social emotional skills learned in school and reinforced at home.

Social Emotional Competencies*

• Relationship Skills
  Communicating, listening actively, cooperating, resisting inappropriate social pressure, negotiating conflict, and seeking and offering help when needed. 
• Self-Management
  Regulating emotions, thoughts, and behaviors in different situations. This includes managing stress, controlling impulses, motivating oneself, and setting and working toward achieving personal and academic goals. 
• Responsible Decision-Making
  The ability to make constructive and respectful choices about personal behavior and social interaction.
• Self-Awareness
  The ability to accurately recognize one’s emotions and thoughts and their influence on behavior. 
• Social-Awareness
  The ability to understand social and ethical norms for behavior.

*Source: Collaborative for Academic, Social, and Emotional Learning (CASEL)

 
 

Social Emotional Skills and Your Child’s IEP

Learning how to recognize and practice healthy interactions with others, manage emotions, be part of a team, make good decisions/recover from mistakes and show respect for other people—these skills are just as important for success in the world as any academic achievement. 

In planning ahead for your son or daughter’s Individual Education Plan (IEP), ask yourself what success would look like at the end of the school year. Which social emotional skills will help your child reach her/his goals along the way? Consider building those skills into the IEP and brainstorm with the IEP team how to best achieve those goals and the kinds of supports needed.

RESOURCES

Collaborative for Academic, Social, and Emotional Learning (CASEL)
Department of Early Learning
Edutopia
SEL for Washington

 

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.

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.

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.

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.

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.

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.

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

Best Friends Forever? By Rachel Nemhauser

Nate is an awesome kid.  He’s funny as hell. He’s silly. He’s energetic. He’s creative. He’s non-judgmental. He’s sloppily affectionate and tremendously sweet.  His enthusiasm for the world around him is contagious and his laugh is completely infectious. He loves whole-heartedly and has never said a mean word about another person. Like I said, he’s really an awesome kid.

With a resume like that, you might be surprised to learn that Nate doesn’t have many friends. The phone doesn’t ring for him very often, he trick-or-treated alone this Halloween and a four day weekend just went by without any playdates or get-togethers.  He rarely gets invited to birthday parties, spends most of his time with his family, and sees his peers almost exclusively at school.

Of course, Nate’s developmental disability, limited vocabulary, excess drool, and unusual behaviors make enduring and meaningful friendships a challenge for him.  His lack of a strong desire to cultivate friendships doesn’t help.  Most days he’d rather do an activity of his choosing than accommodate the preferences and tastes of a playmate. He prefers his own house, toys, and favorite TV shows to the alternative of trying something new or different. He has little interest in modifying his own behavior to impress another person.  That’s just not the way he rolls.

With all of that said though, Nate loves being around other kids.  He doesn’t always want to join in their activities but he likes to observe and hang out close by.  He loves to be included in the noise and fun and chaos, and is especially thrilled if a peer shows interest in his interests. On the rare occasion that he does attend a birthday party, there is not a single other guest more enthusiastic when the birthday kid blows out his candles. Nate is joyous around other kids and he’s not afraid to show it.

As his mom, I yearn for more friends for him.  Trick-or-treating with a big group of kids is a blast, and going without friends can be lonely. Getting invited to a birthday party feels so good and being left out doesn't.  Having a friend call to check in on you can turn around a bad day really quickly.  Feeling accepted, warts and all, from someone outside your family is so completely validating. I desperately and whole-heartedly want those things for him. I also know that my companionship is not enough for him, and that he needs friendship for all the reasons that everyone needs friendship: company, entertainment, support, feeling a part of something, and so much more.  As he gets older and becomes an adult, I expect his need for friendship to grow exponentially.  I can't plan to be his mom and his best friend for the rest of his life; he deserves so much more than that.

How do I encourage friendship to a kid not missing it or wanting it?  How do I convey to Nate’s classmates and their parents that he would welcome being included, and has a treasure-trove of gifts to offer?  Like many aspects of raising Nate, our quest for friendship is a work in progress. 

Please share your stories and check back soon for more perspectives on disability and friendship. We look forward to hearing from you and learning about how others have answered these very complicated questions!

Facebook Post by Anonymous

The following message was posted to Facebook recently, on a private group wall, and is being reprinted here with permission of the author.  While meant for a limited audience, its message may resonate with many of us.

Over the last few weeks, well meaning friends (even my husband), have warned me to not share too much, least people judge unfairly. That I should remove posts. I want to be clear, I am very aware of how it may appear to some. That there are those that may, as my husband fears, think less of the person I am.

Well, shame on you. Shame on society. I am not weak for admitting that I need help, I have been through things that most wouldn't come out the other side. Seeking and accepting help does not make one weak, especially given the alternative. I have been breaking myself to try fix my family and everything on our plates, to try and help our special needs child. If I do not reach out for help, it will end sadly. How unfortunate to live in a society that is hush-hush on things like suicide. Where I would feel shamed into being quiet about what is going on now.

The truth is that many special needs families are greatly suffering, but they suffer in silence. I know this because of the private messages they send me. It's no coincidence there's a 90 percent divorce rate, a gross increase of a anxiety and depression, suicide...the articles you read about the horrific end with these families sometime is not a joke. There are reasons for these things. It is inexplicably hard.

Knowing full well that there are those reading my posts that aren't capable of understanding or will judge our situation, why do I still share? I share for two reasons: 1) There are those that have pioneered these roads already, that know what to do and what resources there are. Who actually can help. They have spoken up and pointed my family in the right direction. Even though there are those that have turned their backs, there are those that have breathed life back into my family and are helping us to keep going. 2) This is the biggest reason. Perhaps you are also living in the discovery phase. Perhaps your friend is. Living the life of limbo hell, confused and drowning....feeling hopeless. You ARE NOT alone. When things are better, I will be helping these families. This is not ok. I hope watching our journey unfold inspires another mama to keep fighting, to seek help, to take care of herself and her marriage, to find her voice and ask for what she needs. I hope it inspires even one person, to speak up and say "Things have gotten so bad, that I feel like taking my life is the only solution left." Are those words scary? Very. Is it hard? Hugely. But they are the words that can save your life and start to help make things better.

Things had gotten so bad that I had an entire plan, start to finish. A way to keep the children safe and someone to be here immediately, a way so my family would never see, the best way possible. I even researched all the details. Because I spoke up, we are starting to get help. My husband's dad drove here from Spokane when he finally broke down crying and admitted to how awful things have become. A friend of our family took our son for a desperately needed break for him and everyone. Community members have lent a helping hand to help us get our house in order. My husband is taking time off work. We are finding counseling for the whole family. Today I am going to either be hospitalized in-patient or out. I hope out, but I am now open if not. We have learned of more resources to help us, to help him. Because of all of this, I am choosing to keep fighting instead of the plan I had intended to follow through with as of Friday.

Let me repeat that. On Friday I told my husband through tears that I was sorry, I simply could not go on anymore, that there was too much pressure and no hope and no end and I was a prisoner in my home.

If I hadn't shared, I could very likely not be here anymore. I am not saying this to scare anyone. I am sharing this in the hopes that someone speaks up. So friends and family don't end up losing someone who felt they should not share. Who felt they should suffer quietly. Please please please don't. Ask for the help you need, but first learn what that help is.

http://www.huffingtonpost.com/ellen-stumbo/7-practical-ways-to-help-a-special-needs-family_b_4215728.html

Holly's Story: Food, Music and Nice People

Profiles in Employment: A Celebration of National Disability Employment Awareness Month

What do you like most about your job?
The really good  food. I get free lunch!

Is there anything about your job (or you) that would surprise people to know about?
The music is really cool.

What has been your best experience about working at Cafe 43 so far?
I have really nice people to work with.