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MediSked Applauds Strong Disability Rights Advocacy at The Arc of North Carolina

/in /by The Arc

By Linda Nakagawa, Market Policy Analyst, MediSked

Advocacy is the foundation upon which the disability community has grown into a powerhouse. The future of the movement depends on the many advocates across the country who are engaging on the local, state, and national levels to protect the rights of people with disabilities and support their inclusion in the community.

The Arc of North Carolina uses MediSked products for data tracking in their service delivery. The chapter is also an advocacy leader in the state, and we have long admired their strong commitment to their advocacy work. So we reached out to Melinda Plue, Director of Advocacy and Chapter Development at The Arc of North Carolina, to share some of the advocacy efforts the state chapter and its 23 member chapters have made this year.

The Arc of North Carolina has made use of the comprehensive advocacy toolkit provided by The Arc of the U.S. to play an active role in the fight to save Medicaid this year. Self-advocates and family members wrote powerful letters that were sent to The Arc to hand-deliver for state delegations. At the state level, The Arc of North Carolina has done media campaigns, lobbying, and rallies. The success of advocacy depends on real life stories, heartfelt letters as well as real data to back up the facts on which these issues are based.

Another area where The Arc of North Carolina has been especially active is in grassroots local advocacy and community engagement, in partnership with their member chapters. Some actions include:

  • Barrier Awareness Day: The Arc of Davidson County is hosting Barrier Awareness Day, to give individuals without disabilities the chance to navigate through life as someone who does experience a disability. Participants engage in simulations that mimic mobile, visual, and hearing impairments and are taken out into the community. The event leads residents to really think about the accessibility of their community.
  • Wings for Autism/Wings for All: Many chapters of The Arc in North Carolina participate in Wings for Autism®, a grant-funded program from The Arc’s national office that simulates an airport experience for individuals with autism spectrum disorder and individuals with IDD. The program gives families the opportunity to experience, at no cost, all the processes involved with air travel.
  • Self-Advocates’ Conference: The Arc of Greensboro, The Arc of High Point, The Arc of Davidson County, and The Enrichment Center in Winston-Salem host a conference for self-advocates around the state. The conference, which is entering its sixth year, is planned by self-advocates and staff from the four chapters and focuses on vital information that self-advocates have identified wanting to learn more about. Beginning in March of 2018, this conference will be a part of the state’s annual Rooted in Advocacy conference, hosted by The Arc of North Carolina, as it has become so well-attended.
  • Self-Advocacy Movement: Self-advocates must be decision-makers during conversations that involve the disability community and for causes they are passionate about: “Decisions ABOUT me should INCLUDE me.” The current board president of the state chapter is a self-advocate, and self-advocates are on just about every board of local chapters of The Arc. The chapters of The Arc are proud of supporting self-advocates to teach them how to get involved on boards, not only at The Arc but for other organizations in their community.
  • Advocacy in Public Schools: Staff resources are dedicated to support families as they move through the special education process. Many local chapters and the state work together to empower families and teach them how to advocate for their children.

To know where advocacy can be most effective, you need to know who you serve and communities in which people with intellectual and developmental disabilities live alongside people without disabilities. MediSked partners with The Arc and supports chapters of The Arc across the country with MediSked Connect – Agency Management Platform. MediSked Connect is a platform that streamlines procedures and centralizes data with tailored workflows, detailed service documentation, holistic health data, outcome tracking and reporting, and integrated billing management that is implemented in a collaborative process with each agency.

This year, more than ever, we have been proud to partner with so many strong organizations as they deliver services in their community and fight for the future of services and supports for people with disabilities.

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Champions Change Lives

/in /by The Arc

Become a ChampionThis year– we shared with you inspirational stories about three individuals who are working to create a better future for their families, their peers and the nation as a part of The Arc’s nationwide movement towards independence and inclusion for all people with intellectual and developmental disabilities (IDD) and their families. Each of them are champions for The Arc’s movement.

Champions like David — creating a future for himself while helping his brother achieve his dream of sustaining employment in the community. Champions like Kim — advocating so strongly about inclusion for both of her daughters that she founded a nonprofit to foster an inclusive environment for kids in schools across the country. Champions like Joe — dedicating his life’s work to creating a better future for himself, his brother, and his peers as a selfadvocate and teaching others to be their own best advocate.

David, Kim, and Joe are a true inspiration. Looking to the future, it is clear that we need many more champions to realize the vision of individuals with IDD getting all the supports they need to lead a fully inclusive life.

This year, The Arc engaged in groundbreaking work to innovate and address the needs of individuals with IDD through our national initiatives including: Wings for Autism, our Center for Future Planning, and our National Center on Criminal Justice and Disability, all while continuing to aggressively pursue our legislative agenda.

Our Wings For Autism® program really took off this year. A travel training simulation for families that have a son or daughter with autism or other disabilities continues to gain traction and is being implemented by chapters of The Arc at airports across America including in North Carolina, Florida, Alaska, Oklahoma, Washington, Arizona, Virginia, Maryland, District of Columbia, Connecticut, New Hampshire and Massachusetts.

The Center for Future Planning a resource center designed by The Arc to help families and individuals with IDD to create person-centered future plans. The center will support families by empowering person centered planning in order to help them articulate what they would like to achieve over the course of their life and then providing a concrete plan to help them do so.

We also broke ground to protect the rights of people with disabilities in the criminal justice system, through the launch of our new National Center for Criminal Justice and Disability funded by the U.S. Department of Justice.

However, these initiatives require the dedication and generosity of champions like you to ensure they become fully effective, sustainable and continue to meet community needs into the future.

It is only through your financial support that The Arc is able to continue its important work.

The collective voice of champions like you will advance and protect the human rights of individuals with IDD and help them achieve full inclusion and participation in their communities today and into the future. Please become a champion for The Arc and Donate Today!

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A Mother’s Open Letter to The Arc About Wings for Autism

/in /by The Arc

Dear Sarah,

I am writing to express my continued gratitude for the Wings For Autism event held in Anchorage, Alaska.

Our 11 year old son Jack experiences high functioning autism, which he was diagnosed with at four years of age. While Jack did fly at ages 5 months and 9 months respectively, in his memory he has never been on an airplane, which raised concerns for us, since we have scheduled air-travel this summer.

The Wings for Autism experience was far beyond any of our expectations (our family of 4 attended). The attention to detail, real life/real time airport experience of obtaining tickets, line waiting, Transportation Security Administration (TSA), airport exploring, more waiting at the gate; it was all so needed, and so appreciated. The time on the aircraft was more than we could have ever hoped for, between the taxiing and “cruising altitude” beverage/snack service, the crew going through their regular motions/speeches and the pilots coaching us through the sounds and motions of the aircraft… truly exemplary. To add to this, the generosity of all of the hands at play, from the folks getting us through the lines, to the TSA, to the airport staff, to ground crew, to the flight staff and of course the pilots, The Arc of Anchorage, Ted Stevens International Airport for handling the logistics and security of a “mock” boarding and flight on their active airstrip, not to mention all of the volunteers and hours/dollars funneled into this event is staggering and to know that this was all done for our kids, our families to have a better experience, well, it is so humbling and overwhelming to me it makes me want to cry.

Thank you.

As for our Jack, he struggled. And it couldn’t have been a better place, better environment, FOR him to struggle. It gave me a good glimpse of what I might see and might expect this summer. Jack did very well for about the first 1 1/2 hour (noon to 1:30), and then he started to lose his patience. The noises (especially from children), the waiting, the MORE waiting, it set him right to the edge. (It is worth noting that there are interventions I could have used/will use in the future, but I wanted him to have a “rougher” experience for this practice run so I could really have an accurate view of where I needed to focus for our trip this summer; also, I knew this was the time for him to have it harder, rather than the “real” time.) When we boarded the aircraft and sat down in his window seat, he began to emotionally shut down. He started to have what can best be described as a panic attack, breathing fast and clenching his hands, and said he “didn’t like this anymore” and “wanted to get off/leave”. I told him we could shut the shade on the window, which we did, and I just quietly talked him through it (I figured he would want the window, but next time maybe I’ll seat him elsewhere). I told him that the best thing we could do was to sit in the uncomfortableness and be uncomfortable, and eventually the anxiety feeling would start to come down. I reminded him that if we “ran away” from this moment it would only be much worse the next time (I personally have diagnosed Obsessive Compulsive Disorder, and this is true for me; I try and use this approach with Jack as well), and I knew he didn’t want to miss out on travel and experiencing new places like other people.

Jack eventually pulled the shade back up, and about 20 minutes into it, he calmed a bit and smiled, and said he felt better. He kept wanting reassurance over and over that we weren’t going to take off. He is terrified of motion sickness and throwing up, and he kept talking to himself about how he’d be okay, and how he probably wouldn’t throw up on the real trip this summer. He checked out the bathroom as well. While he never fully relaxed, all in all it went very well. When it was all said and done, he claimed it was “awesome” and said on a scale of 1-10, it was a 10 :).

Jack still has worries about taking off/landing, and getting sick on the plane. We will cross those hurdles as they come. Yet, this experience with Wings For Autism gave us something we normally could never obtain, which was practice in an airport and on a real aircraft. Who gets to have that?!! I don’t think I can fully punctuate how important and valuable this experience was to our family and to Jack; all I can say is thank you, and hope it is a program that can be repeated so more families can benefit like we did.

One thing that all parents keep in their proverbial back pocket, ESPECIALLY families with special needs children, is the ability to leave/exit a situation if needed. If the event is too stimulating, your child is having a meltdown, the event is too long, there is too much noise, etc., YOU CAN LEAVE. It is a safety net, and benefits not only your child, but it is also executed in consideration for the people around you. A plane is probably the ONLY environment in which you CANNOT leave. You can’t even really move away. Knowing this certainty can be figuratively paralyzing for the parents; what are you going to do if things go poorly? All you can do is the best you can, but that one ace-in-the-hole of leaving the situation is off the table. It is enough to keep some of us from wanting to knowingly put ourselves and our kids in that potential situation. That is the way it has been for us. I would be remiss if I did not admit my own anxiety about air travel this summer, but I know it is something we must rise to and experience, and I will do everything I can to support it going as smoothly as possible for both Jack and for those around us. It is a tall order. Thanks to Wings For Autism, it is now more attainable.

Special needs, and all the trimmings that come with it, can be difficult, even impossible, to understand. The good thing is, people don’t need to understand. On an empirical level, it is too much to even ask. To raise my expectations and hope for someone else to understand what our life is like, what Jack’s life is like, might be asking something that person cannot give. However, everyone is capable of giving compassion. Compassion does not have to in concert with “getting it”; compassion can stand alone. And when a parent like me or even Jack himself receives a knowing look of compassion, a gesture in kind, a gentle word or nod, an extension of patience, it is such a gift. That is the empathy that nourishes and gets us through that moment, that hour, that day, or that week. It satiates in a way that even I cannot express, and it keeps me going. It keeps Jack going. And for this, I will always remain truly grateful.

For this opportunity, we remain in your debt.

Warmest Regards,

Katherine

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Reflecting on Wings for Autism

/in /by Guest Blogger

By Sylvia Fuerstenberg, Executive Director of The Arc of King County

Wings for Autism took flight at SeaTac Airport, and it was a great success. I am so grateful for all of the families who took part in our launch, as well as the many volunteers who made the event a success. The commitment of The Port of Seattle and Alaska Airline is phenomenal. They are single minded in making travel inclusive for everyone. The TSA even made going through security a positive experience. When that is true, you know that everyone was committed! Although I could say a lot more about the event, I would rather let some of the parents and event partners tell you about their experience.

From Lisa Okada Visitacion, Mom:

“Phenomenal event. Increasing awareness and understanding. Building confidence and skills. Giving families hope. These are just a few thoughts I had about the Wings for Autism event yesterday. Kelli (and all the other participants) did such an amazing job. Many, many thanks to all the volunteers (there were many!) and staff at The Arc of King County, Alaska Airlines, TSA and the Port of Seattle. We will remember this experience forever and will most likely be flying Alaska Airlines when we travel by air. (I wonder if we can we take along a few of the volunteers, too?!?!)”

From Jacki Jones Chase, Mom:

 “We got in the plane and they taxied it all over the airport runways. Then they stopped and let the kids, and adults, go check out the cockpit and bathrooms – they really put on an awesome event for kids with Autism!”

From Jennifer Wade, Mom:

 “From the moment my family arrived at the airport, there was a friendly, smiling person with a Wings of Autism T-shirt on, guiding us along our way. Every step of the process we were assured, explained the process and every attempt was made to ensure we were comfortable, our questions answered and made to feel at ease in what is potentially a stressful situation for any parent /caregiver, taking a child on a flight. A special thanks to our pilot Mark who walked thru the entire waiting area talking to each family, meeting the kids, shaking hands and relaying his own personal story and why the event was so important to him. Having a child with special needs I’ve learned that it’s the support of family, friends, specialist and complete strangers willing to share their own insight and compassion that keeps our momentum going onwards on the path of progress and potential.”

Ray Prentice, Partner at Alaska Airlines:

“I didn’t realize until this event that a little bit of additional training and guidance, combined with our great caring employees, could totally change people’s lives. Speaking on behalf of Alaska Airlines’ volunteers I can openly share that we had a blast. We felt a close connection with everyone at the event.”

From Sue Hanson Smith, Partner at The Port of Seattle who traveled to Boston to learn about the event and inspired us to bring it to Seattle:

“Thank you for all for pulling off a spectacular, in some cases, a life-changing event. I am so proud to be part of such a well-organized, energetic, and fun-loving team of professionals! The Arc of King County rocks! Without you we would not have had the families and the special kids to learn from.

Without Alaska Airlines we wouldn’t have been able to provide the “life-changing” experience. Thank you so much for your flexibility and your generosity in providing the airplane experience and memories to these selected families and their children. The t-shirts were the best!

And…TSA was outstanding in their ability to provide an easy, pleasant experience to the families and their children. From all the comments I heard, the first Wings for Autism at Seattle-Tacoma International Airport was a great success and it’s because of all of you.”

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Wings for Autism™ Program Takes Off Nationally in Seattle

/in /by The Arc

Wings for AutismSeattle, WA – Tomorrow, The Arc will hold its first Wings for Autism™ event at Seattle-Tacoma International Airport​ (Sea-Tac), in partnership with Alaska Airlines, the Port of Seattle, the Transportation Security Administration, and The Arc of King County. Wings for Autism™, one of The Arc’s newest national initiatives, is an airport “rehearsal” specially designed for individuals with autism spectrum disorders, their families and aviation professionals. Originated by the Charles River Center, a local chapter of The Arc in Massachusetts, and the Massachusetts Port Authority, Wings for Autism™ is designed to alleviate some of the stress that families who have a child with autism experience when traveling by air. The program provides families with the opportunity to practice entering the airport, obtain boarding passes, go through security, and board a plane.

Wings for Autism™ also gives airport, airline, TSA professionals and other personnel the opportunity to observe, interact and deliver their services in a structured, learning environment. This experience is equally useful for families that have a member with other intellectual or developmental disabilities (IDD) that are concerned about the ability of their family member to travel.

Thirty one families from the Seattle area have signed up to benefit from this experience. The day will kick off with families arriving at the airport at 11:20am. Upon arrival, event attendees will check in to receive their boarding pass, go through security, and be greeted at the gate prior to boarding the plane. A small reception will be held afterwards.

“We are excited to begin national expansion of Wings for Autism™ program in Seattle. For parents of children with autism spectrum disorders, everyday tasks can sometimes prove to be far more difficult for their child. Air travel can prove particularly challenging between clearing security, the overwhelming noises, and harsh lights. This program will not only alleviate the stress children and their parents may feel, but help educate airport and airline professionals about how best to serve children with autism or other intellectual and developmental disabilities in the future. We are grateful to our partners on the ground in Seattle – Alaska Airlines, the Port of Seattle, the Transportation Security Administration, and The Arc of King County – who are committed to making air travel possible for families with children with autism and other intellectual and developmental disabilities,” said Peter Berns, CEO of The Arc.

“We’re honored to host Wings for Autism at Sea-Tac Airport,” said Mike Ehl, director of aviation operations for the Port of Seattle. “The program literally opens a window to the world for families with children with autism and other disabilities by demystifying the airport experience.”

“Our employees are trained to provide the highest level of security and customer service to all who pass through the security checkpoint,” said Jeff Holmgren, TSA Federal Security Director at Seattle-Tacoma International Airport. “TSA welcomes the opportunity to work with these families to demystify the aviation security screening process.”

“Everyone deserves a nice vacation with their loved ones. That’s why it breaks my heart to think of the families who have never been able to travel outside of the Pacific Northwest. Most families take airplane travel for granted, but families who care for children with autism often fear getting on a plane, or even going through security at the airport. Thanks to the support of our Wings for Autism partners and volunteers, our goal is to produce this event several times a year, enabling all families to travel with more confidence, making great vacation memories together,” said Sylvia Fuerstenberg, Executive Director of The Arc of King County.