Volunteer Spotlight: Joining the Village

Sowmya Selvarajan, community volunteer, has become a favorite regular at Gift of Time respite events. She was first drawn to volunteering with Gift of Time due to her love for kids with special needs. “I believe it’s true that it takes a village to raise a child and that is even more true for kids on the spectrum,” she remarked, “I want to be part of their village.”

Sowmya appreciates the insight she has gained from her ongoing engagement in the special needs’ community and says she is most surprised by the knowledge that she acquires every time she volunteers.

Sowmya first connected with Washington Autism Alliance & Advocacy through Volunteermatch.org. Since then, she has been a regular at the quarterly Gift of Time parent respite events, working one-on-one with kids and helping manage and lead our most recent event last month.  

Connecting with a special friend.

“I’ve been doing this for over two years.” commented Sowmya, “I love how the kids recognize me with big warm smiles when they come back.”

Gift of Time gives parents of kids with autism a four hour respite, while at the same time providing an opportunity for meaningful social interaction for kids on the spectrum.

A favorite memory of Sowmya’s is from her first time volunteering at Gift of Time. She was paired with a nonverbal 17-year-old young man on the spectrum and felt completely lost at the start. With encouragement, training, and support from WAAA staff, she gained confidence with her new friend. Toward the end of the day he took her hand and put it on his forehead when he wanted to sleep. She recalls fondly, “it was so rewarding – it was like he accepted me in his circle.”

A truly compassionate humanitarian at heart, Sowmya remarks, “volunteering and giving back to the community are the only ways to to gain experience and real happiness in life.”

Our next Gift of Time is scheduled for Martin Luther King, Jr. Day, Monday, January 15, 2018, for children ages 5-10. To learn more about this or other volunteering opportunities at WAAA, visit our website or contact the office at 425-894-7231.

Story of Hope: Meeting SpecialEd Needs in the Community

The Khouw family knows a few things about tackling challenges in the special education system. Andrew and Nicole Khouw first reached out to Washington Autism Alliance & Advocacy (WAAA) when their son Ethan’s behavior started to regress in school a few years ago. Seeking Special Education support, they needed guidance on how to advocate for proper support for Ethan. Since then, WAAA has walked hand-in-hand with the family providing advice, informing them of Ethan’s legal educational rights, connecting them with resources, and helping decipher the extensive Special Education paperwork process.

WAAA’s Special Education Advocacy program grew due to the number of calls from parents like Andrew and Nicole, seeking advice to better empower them as advocates for Ethan.

After years of being in and out of public and private school programs, in a moment of frustration last year, Ethan, then 9 years old, was expelled after a meltdown in class.

David versus Goliath

Early this summer, the Khouw’s tried to work with the school district to re-negotiate for the educational support that Ethan needed, but in a surprize move, the district instead proposed to send 10-year-old Ethan to a 24-hour residential facility, the nearest of which was Utah. The Khouw’s rallied a response, speaking at the school district Board meeting, talking with reporters, and enlisting community members to testify on Ethan’s behalf.

Due to Andrew and Nicole’s tenacity, the school district reconsidered their response. In August, for the first time in five years, Ethan got his teacher assignment and educational plan before school started. Attending for :30 minutes a day to start, the plan is for him to gradually increase his time in the classroom.

Thrilled for the opportunity for a fresh start, Ethan’s parents brought a cake into WAAA to celebrate. With a smile across her face and her boy in her arms, Nicole commented, “Now this, this is what inclusion looks like.”

Families need to know they are not alone. Inclusion means that we collaborate and come together as a community: parents, educators, school districts, advocates, and students. WAAA is here to help even the playing field for families and advocate for those who struggle to have their voice heard so that children with autism and developmental disabilities can get the education they need to thrive.

 

All kids should dream big for their future.

Gift of Time – Fun for All

From paint explosions to an all-out Nerf battle, youth at Saturday’s Gift of Time (GOT) were able to do what they do best, play! Tweens and teens with autism and developmental disabilities had a day of socialization and fun while their parents had a few precious hours of respite.

Katilyn Angrove, Washington Autism Alliance & Advocacy Office Administrator and Volunteer Coordinator commented, “Gift of Time lets these youth be their most authentic selves, free of judgement, norms, and best of all, structure. It was delightful to watch the teens and tweens  spend the day building with Lego’s, playing with kinetic sand, taking snack breaks, and generally appreciating the freedom Gift of Time allows.”

The next Gift of Time will be for ages 5 – 10 on Martin Luther King, Jr. Day, Monday, January 15th, 2018.   

Sample Talking Points – Medicaid Cuts

Call: the main Capitol line at: (202) 224-3121 (You’ll be directed to an operator at the Capitol switchboard who can direct you to your representative.

Want Ideas of What to Say

Hello, my name is [Name]. I’m a resident of [Town, State] and [I/my child/sister/friend/co-worker etc] is a person with a disability who relies on Medicaid for health care and community support.

The Senate is considering a bill, the Graham-Cassidy bill, that proposes devastating cuts to Medicaid and removes protections for people with pre-existing conditions.

11 million people with disabilities rely on Medicaid for critical services that help them live and participate in their community.

I am asking [Representative’s Name]. to oppose the Graham-Cassidy bill, or any other bill that cuts or caps Medicaid.

Thank you for taking my call!

[IF LEAVING A VOICEMAIL: please leave your full street address and zip code to ensure your call is tallied]

Personal stories are the most effective form of advocacy. Talk about why is Medicaid important to you.

  • If you or a family member are on Medicaid (including a waiver), what are the most important services to you? What difference has that made in yours and/or your family member’s lives?
    • Access to critical healthcare or therapies
    • Ability to receive in-home supports, residential supports or live independently
    • Ability to work or go to a day program (so your family can work)
  • What was your and/or your family member’s lives like before receiving Medicaid services?
  • Are you or a family member on a waitlist for Medicaid services? How would getting services make a difference in your lives?

ABA’s Urban/Rural Divide

Parenting a child with autism has its challenges. Washington Autism Alliance & Advocacy recognizes that families residing outside of metropolitan centers face additional access challenges due to their location. Rural areas of Washington state have significantly less access to medical infrastructure, transportation, and employment. Applied behavior analysis (ABA) services are no different. Beyond the major population centers of Washington, ABA clinics are rare. Due to a lack of ABA providers many children go years without services. Rural parents are frequently faced with an impossible choice: travel a hundred miles for service, leave their child untreated, or pull up roots and move. WAAA member Jessica Van Epps moved her family twice to get her son services, and his improvement was life-changing. Then that program closed, and she’s now facing a three hour drive to the closest clinic. She laments, “Maybe I’ll move again. Go to Seattle, and get a studio for the two of us.”

 

Rural/urban health care divide

Rural areas have significant economic and geographic challenges, leading to significant resource disparities. Furthermore, rural populations pay a higher percentage of their income on out-of-pocket healthcare costs. Primary care is generally less available in rural areas, but the disparity is even more significant with regards to specialized, highly sophisticated, or high-intensity healthcare. Residents of rural areas are less likely to have employer-sponsored health insurance, and more likely to be on Medicaid.

Darker areas have more patients trying to see fewer providers.
Source: CMS market saturation and utilization data tool

 

Beyond the healthcare infrastructure, there are significant additional burdens borne by rural populations. Rural populations are more likely to be low income or unemployed. Rural residents are more reliant on public transportation, but transportation options are much lower: only 60% of rural counties nationwide have public transportation. Each of these issues has an effect on rural populations’ health outcomes, so residents  experience higher rates of preventable conditions like obesity, diabetes, and cancer.

 

Rural/urban divide in applied behavior analysis

 

As a specialized health care service, applied behavior analysis can be difficult to come by in rural areas. Roughly one-third of Washington’s counties have no ABA providers – shown in white on the map below. One-third have a bare handful of BCBAs (light blues), and one-third have a significant number of BCBAs. On the other hand, King County, home to 30% of Washington’s population, has more ABA providers than the rest of the state combined.

 

ABA Providers by County

 

A primary complaint among Medicaid ABA providers is low reimbursement: For example, supervisors are required observe 5 percent of training, and while private insurance pays for the supervisor’s time, Medicaid pays $0. Where Medicaid does pay, rates are as low as 33 cents on the dollar compared to private insurance. Thus, even the largest insurance network in Washington has only 35 ABA clinics. As a result, at any given time almost 1,900 children with Medicaid are waiting for an opening to receive treatment.

In areas with denser populations, clinics can tailor their payor mix, accepting patients with high-paying private insurance and using those higher rates to offset losses associated with low Medicaid rates. However, if the service costs more to provide because Behavior Therapists spend more time driving, or there are fewer people with higher reimbursement, a clinic can afford to only accept a smaller percentage of Medicaid patients. When working with low-income families, some BCBAs try to provide enriching toys and educational materials to kids in need, but doing so adds another expense to the provider’s cost of services.

One proposed method of improving rural BCBA representation is expanding the University of Washington’s BCBA training program to their Spokane campus. Graduates frequently stay where they went to school, so an eastern Washington BCBA program should produce BCBAs who are more likely to practice east of the Cascades. Locally grown providers have other benefits, since they are familiar with the resources and needs of the area. Lastly, given the demand for BCBAs, there’s an economic benefit to easing the path to that area of employment for locals.

 

Takeaway


In urban areas, a child with private insurance might wait a month to receive ABA services, and a child with Medicaid will wait six to nine months. Rurally, the waitlists extend years, if services are available at all. Compounded by complex transportation issues, care is frequently placed completely out of reach. WAAA is working to improve the availability of ABA both rurally and for Medicaid patients. If this article resonates and you need assistance or to share your story, please reach out to WAAA via email or call the office at 425-894-7231.

 

Community Health Matters to Everyone

by Helen Hammer, WAAA Social Work Intern 

 

Washington Autism Alliance & Advocacy (WAAA) joined other local agencies committed to increasing the health of our community on Saturday, September 9th, at the second annual Community Fair hosted by HealthPoint in Redmond.


Sponsored by Community Health Plan of Washington, HealthPoint’s gathering is a prime example of agency collaboration making a difference in the community. The focus of the community fair was to connect families with community resources while simultaneously providing fun activities for children. In addition to WAAA, other fair participants included:

Gathered together in the parking lot of the Together Center, the home for WAAA and other social service agencies, the three-hour event gathered considerable attention from children and their families. The event was marked by colorful balloons, a bouncy house, vibrant music playing in the background, and dance performances.

WAAA took the opportunity to connect with local families and share our mission to help families meet the health, social, and educational needs of children and adults with autism and developmental disabilities.

Beyond the participants listed above, East King County has a wide variety of support organizations addressing issues ranging from basic needs like housing, nutrition, and healthcare, to specialized agencies like WAAA. Together, we are working to made a difference in the lives of vulnerable populations across Washington.

Britt Wibmer: Building Community Support

Britt Wibmer knows how to throw a party. A luxury real estate broker with Windermere Real Estate, Britt is giving back to the autism community as the Chair of this year’s gala, Night Out for a Cause on September 30th at Overlake Golf & Country Club in Medina.

 

Auctioneer Larry Snyder and Britt Wibmer.

Britt first connected with Washington Autism Alliance & Advocacy (WAAA) via mutual friends. She declares it was “love at first sight,” the instant she met Arzu Forough, founder of WAAA, commenting, “Arzu made me feel like I was part of the family immediately.”

#EmbraceAutism WAAA founder Arzu Forough, Karin Grinzel, Britt Wibmer.

“The community I was able to connect with and the support that I receive from WAAA has made a huge difference in my life — I appreciate so much having people around me who relate to my challenges. I am bound and determined to provide that support for other people.” As auction Chair, Britt asserts, “I hope we raise more money than ever before. I would love to provide funds to expand WAAA’s outreach. People need to know they have a place to call. I want the most resource-challenged families to know they have a place to go for help.”  ​

Mom to Ivan (age 11) and Gabe (age 9.5), Britt is a master at elegantly juggling multiple tasks. Due to his pediatrician identifying speech delays, Britt enrolled Gabe at The Boyer Clinic. Quite quickly, they recommended occupational therapy and soon thereafter, they indicated that Gabe showed signs of autism. After a year on a waitlist, Gabe was diagnosed with autism at age 3.5. Britt recalls struggling with “tons of uncertainty and fear” facing an unknown future.

These days she enjoys biking around her Medina neighborhood with her boys, remarking she’d “follow Gabe anywhere.” She feels positive looking ahead, “Gabe is a bright, creative kid who has the world ahead of him. ​He has the ability to move mountains and I think he will take on the world and make his mark.”

When asked about the  joys and challenges of raising a child on the spectrum she notes she would love for people to be less judgmental when they see children misbehaving in the world, remarking, “you never know what’s going on behind the scenes.​”

Keeping it real for Mother’s Day.

Although a struggle at times, Britt credits that having a child that’s different has given her a purpose in life. “Having kids with special needs has changed my perspective — it has enriched my life.”  Recognizing she no longer holds the same judgement or control issues she used to, she reflects, “I look at people differently now. ​I never thought I’d be that weirdo in the grocery store… and I am!”

Please join Britt as we build a community of supporters to help families across Washington state meet the health, social, and educational needs of children and adults with autism and developmental disabilities.

 

DDA Waiver Notice & Potential Changes

By Trish Thrush, Health Law Advocate/Insurance Navigator

* This is intended for informational purposes only and is not medical or legal advice.*

 

You might have received this notice from the Developmental Disabilities Administration.

What does this mean?

Developmental Disabilities Administration Waiver Funds/Services must only be used after you have exhausted all other funding sources.  This means that you must provide proof that you cannot get a service/therapy from your insurance company before using DDA waiver funds.

What Services might be first accessed through Private insurance or Medicaid before using DDA funds?

Behavioral Support & Consultation (might include ABA), Staff and Family Consultation & Training, Nursing Services, Physical Therapy, Occupational  Therapy,  Speech Therapy, Durable Medical Equipment & Services (might include incontinence supplies), Peer Mentoring and Specialized Psychiatric Services.

PRIVATE INSURANCE:

Providing Proof that you cannot access services through Private Insurance:

  • Find out if you have coverage in your Plan. To do so you can request a copy of the Plan Document (also sometimes called the Summary Plan Description-SPD or Benefits Booklet). This is the contract between the employer (or yourself if you purchased the plan) and the insurance company detailing the benefits of the Plan. Click here for instructions on how to obtain a copy.
  • Check the Plan Document for coverage or exclusions. The Plan Document is the contract between the employer (or yourself if you purchased the plan) and the insurance company detailing the benefits of the plan. Click here for instructions on how to obtain a copy. If you are unsure or cannot locate the information please give the WAAA office a call. We can help! One of our advocates loves big Plan Documents and cannot lie (it’s awful and I’m sorry but I’m not taking it back).

If you have coverage but there are no providers in your area that can provide services within a reasonable amount of time (30 days):

  • Call your insurance company and ask for a list of all the in-network providers within a reasonable distance of your home – we suggest 30 miles.  If you get stuck in the time vortex that is “let me transfer you to another department so they can transfer you back” give us a call! We can’t restore your sanity after being on hold for 30 minutes listening to a monotone voice tell you that you can go to the insurance company’s website – that you’ve already used to unsuccessfully find providers – but we can help!  
  • Use this Blank Call Log to document the responses of the providers.
  • Provide a copy of the completed Call Log to your DDA Case Manager.
  • Please consider sharing a copy of the call log with WAAA. It helps us to know when networks are not meeting our community’s needs.
  • Then it’s dance party time because you just did insurance stuff.

If you don’t have coverage:

  • Request that your child’s pediatrician or general physician submit a request for prior-authorization of the service. This should result in an official approval or denial of coverage.
  • Give a copy of the Plan Document and the letter of denial to your DDA Case Manager.
  • Please consider sharing these with WAAA as well. We can use them to help you appeal for coverage through your private insurance. Also, reading Plan Documents keeps our insurance advocate from making up more “songs” (see below).

 

MEDICAID/APPLE HEALTH  

If there are no providers that can provide services within a reasonable amount of time:

  • Call your Medicaid/Apple Health Managed Care Plan and request a list of providers of the service within a reasonable distance of your home. For ABA use this blank Call Log to call each Medicaid/Apple Health ABA provider and ask them the questions in Column I “Call Summary”. For other services use this Blank Call Log.
  • Once you have completed this provide a copy to your DDA Case Manager.
  • Please also provide a copy to WAAA. We love collecting documentation. Seriously we’re like documentation hoarders. Thank goodness for electronic storage or we would be swimming in paper right now. And I swear we will use them for good – to improve access to treatment. You have my word as an advocate and a banana intolerant coffee lover (hey it’s a good oath-have you had a better one today? I think not).

If you have any trouble please…

Call WAAA (call WAAA) on the line
Call us, call us any, anytime
Call WAAA (call WAAA) my friend
You can call us any day during business hours (business hours)
Call WAAA!

See, she has too much time on her hands. For the love of all that is good in the world give her your documents people!

Premium Payment Program

If you have private insurance and Medicaid, you can apply to the HCA’s Premium Payment Program, which helps with out of pocket expenses. Also, if you have dual insurance (private and Medicaid), you can apply to Hogwarts. Obviously, an owl has to bring you an invitation first, but until then you can apply for the Premium Payment Program, which is nearly as cool as magic because it helps pay for your insurance premiums. Find out more about it by clicking here.

 

20 Steps for Emailing Your Child’s Teacher

By Trish Thrush, WAAA Health Law Advocate

As a member of the IEP team and my child’s best advocate it’s important for me to express myself in a polite, logical way and to document every interaction relentlessly. Yet, I like all Mama and Papa Bears, get irrationally angry when I think my child isn’t getting what he needs. I forget that there are steps to take and I want to organize a march to the school with signs that read “Justice for Devin!” because he was denied his chewelry-one time. See irrational. So, I wrote down these strategies for myself so I won’t forget that it’s not necessary to stand in front of the school with a bullhorn shouting, “But it’s in his IEP!” I hope you will find them helpful too.

Stay calm and focused in your advocacy.

 

20 Steps to writing an email to my child’s teacher:

  1. If the issue is one I am sad, angry or frustrated about I wait 24 to 48 hours before beginning the letter.
  2. Because brain function.
  3. Read Wrightslaw Letter to a Stranger to remind me how to present my concerns in a positive and effective way.
  4. Write out what my concerns are and why they concern me.
  5. Ask myself: Is this worth the time, effort and potential follow up? Are there more important concerns that I should be focusing on?
  6. Ask myself: Is this something my child needs to succeed in her education or is this something I want her to have? To help myself understand the difference between what I want and what my child needs I write the answer into this sentence: My child needs xyz to access the general education curriculum. Without xyz she cannot access the general education curriculum because (such and such negative impact).
  7. Write down what I would like to see happen to resolve my concerns.
  8. Define the steps that would be needed on my part and the teachers.
  9. Ask myself: What additional supports will the teacher need to resolve my concerns?
  10. Ask myself: Is this reasonable for me to ask the teacher to do? To help me be clear that this is reasonable I write the answer into this sentence: My child needs xyz. This is a legal requirement of the law as outlined in (WAC/IDEA). This is written into my child’s IEP and the IEP team has agreed this is one of my child unique needs.
  11. Ask myself what support I can provide to the teacher? What steps will I need to take to be sure the teacher gets this support?
  12. Before I begin the letter write down three areas the teacher has made a positive impact for my student. I will use these to begin the letter by thanking the teacher for their hard work.
  13. Write the letter in a word or notes program (not in email).
  14. Print and read the letter.
  15. Ask myself: If I were a stranger off the street would this explain the problem and provide a solution the stranger would find reasonable?
  16. Ask myself: How will the teacher feel reading this? Reword any sections that sound accusatory or derogative replacing them with polite requests for assistance.
  17. Ask myself: What will an administrator or gatekeeper think reading this? Are there any areas of contention that I can anticipate? How can I reword it so that anticipated points of contention are explained factually within the confines of the law in the hopes that an administrator would read it and agree that this is needed?
  18. Ask a friend or advocate to read the letter and share their feedback with me.
  19. Edit the letter and wait 2hrs before sending in case I think of additional edits.
  20. Send the letter to the teacher.