Each year, the First United Presbyterian Church in Sodus hosts their annual Christmas light show in December to raise money for a cause in their community. In 2018, the church honored Roosevelt Children's Center (RCC) by donating all the proceeds to our preschool in memory of Kasey DeMarree, a former RCC student who passed away suddenly in January 2016.

About 700 community members attended the lights and music show that parishioner, Jim Hopkins, organized.The event raised more than $1,800 for RCC, and a check was presented last Sunday to RCC by Reverend Gail Heimberger, event organizer, Jim Hopkins, and Kelly DeMarree, Kasey's mother.

At the dedication, Reverend Heimberger presented the following prayer: 

Give thanks to the Lord for He is good. His love endures forever. Every good and perfect gift is from above. This day we give thanks for the gift of Kasey DeMarree, for the joy he brought us, for the laughter and for the love he showed us. We are also grateful for the love shown him by Roosevelt School and their dedication to him. We give thanks to Jim Hopkins and his wonderful light show, his sharing of his gifts and also the sharing of the funds it raised. Today we dedicate those gifts to the Roosevelt school in memory and in love of Kasey DeMarree and may these gifts be used to enhance the lives of other children. May these gifts be blessings to both the school and the students. May the love of Kasey continue to shine through us all. Amen. 

Kasey truly did have a smile that could light up a room. "It was so evident that Kasey was loved at home," Kasey's speech pathologist, Annalise Parker, said. "He was loved at school, and he just had the brightest smile of any kid." 

Annalise was just one of the many RCC staff members that Kasey had a positive, lasting impact on. "It's not often that we have to say goodbye to our students like that," she said, "but it stays with us for life when we do. They're like family to us. Kasey definitely taught us more than we taught him."

The Arc New York Executive Director Mark van Voorst told legislative budget makers today that services and support for persons with developmental disabilities are “slipping backwards” because non-profit agencies, due to lack of state funding, cannot pay direct care workers a living wage.

In testimony before the Senate Finance and Assembly Ways and Means committees joint budget hearing, van Voorst said non-profits that support people with autism, Down syndrome, cerebral palsy and other intellectual and developmental disabilities (I/DD) are in the midst of a staffing crisis that risks turning back the clock to a dreadful time in New York State’s history.

“After the revelation of abuse and neglect at Willowbrook State School, politicians, parents, providers and advocates stood together and swore we would never let that happen again,” said Van Voorst, who’s Arc New York is a leader in the #bFair2DirectCare movement. “For decades, we have consistently made forward strides for people with I/DD. Now, for the first time, I believe we are beginning to slip backwards.”

Van Voorst says he is done discussing a “looming crisis” in the I/DD field, and is prepared to present lawmakers with the true impact of an ongoing workforce crisis in a field where overworked, underpaid staff often provide life-sustaining care. He cites troubling examples, including:

• Providers are experiencing noticeable increases in medication errors.
• Medical appointments are being missed or rescheduled due to lack of staff on hand to transport individuals.
• Staff have fallen asleep on the job after a string of double shifts, or after coming to work ill because there was no one to cover their hours.
• Individuals are being moved from their normal residences and placed in alternate homes on weekends or holidays to consolidate staffing.
• Community outings and social opportunities are being canceled because of insufficient staff to support them.
• While there is funding in the executive budget for new residential development, it means little. Providers across the state are unable to open new residential programs because they can’t staff their current homes.
• Aging parents fear they won’t find placements for their children as beds sit open in understaffed homes. In fact, many providers have closed homes altogether due to lack of available staff.

Van Voorst anticipates policy makers will blame violations of quality standards and degradation of services for people with I/DD on poor management. However, he says the root of this pervasive, system-wide problem is inadequate funding, and the solution is in the hands of state leaders. 

Van Voorst’s testimony (see below) outlined outline a pattern in which tragedy and death have historically been the catalyst for change in the I/DD field, and call on New York to address the problem before another tragedy occurs.

“The leader of New York’s largest I/DD provider is sitting here before you telling you that without adequate workforce funding, our field is not sustainable. Today dozens of providers, families and self-advocates will submit testimony to this body pleading for you to take action and fund a living wage for DSPs, as we have done year after year. I caution you to listen,” he said.

“In the aftermath of Willowbrook, New York state and its tremendous network of voluntary providers rose as a beacon of hope for families with loved ones with I/DD. No other state served these individuals as well as New York. Unfortunately, after nearly a decade of static funding, this beacon of hope is fading. We risk sliding again into the darkness. Do not let that happen. Do the right thing and #bFair2DirectCare.”

About The Arc New York
The Arc New York is a family-led organization that advocates and provides supports and services to people with intellectual, developmental, and other disabilities, emphasizing choice and community engagement. The largest non-profit provider of services to New Yorkers with I/DD, The Arc New York has 49 Chapters across New York state, supports more than 60,000 individuals and families and employs more than 30,000 people statewide. This year, the organization celebrates its seventieth anniversary as an advocate and service provider.

At The Arc Wayne, we are fortunate enough to have some incredible volunteers who help the Salvation Army during their Christmas Red Kettle Campaign. Staff and individuals the agency supports went to the Newark location Walmart to ring the bell this year despite some bitter cold and snowy days. Together, we helped bring in $11,863.94 for our local community.

"Your ringers and supervisors were wonderful," Anne Rogers, a Salvation Army volunteer, said in an email to The Arc Wayne staff. "They were punctual, polite, charming, friendly ringers. The shoppers really responded to them with open hearts. I learned from your ringer that we shouldn't even ring so we won't wake up the babies. I will never forget the gentle politeness in those words."

The Arc Wayne's Community Pre Vocational (Pre Voc) program connects individuals with disabilities to volunteer and pre-employment opportunities in their community. Individuals who are supported through this program have volunteered at dozens of businesses around Wayne County in order to gain valuable social and work skills that will help them prepare for future potential employment. People in this program appreciate being able to give back to their communities in a meaningful way, and we were so thankful that we could partner with the Salvation Army to do that again this year.

​If you are interested in learning more about our Pre Voc program, visit our services page or contact Tina Rossman. If you or someone you know works at a business that needs volunteers, we would love to discuss partnering with you in the future.

The Arc Wayne, with help and guidance from Finger Lakes Performing Provider System (FLPPS), will be infusing Cultural Competency and Health Literacy (CCHL) into everything we do at the agency after training is administered to staff, individuals we serve, and other community members.

What is CCHL?

Cultural Competency (CC): The ability to interact effectively and respectfully with people of different cultures and the understanding that “culture” is so much more than race and ethnicity.
Health Literacy (HL): The ability to obtain, read, understand, and use healthcare information in order to make appropriate health decisions and follow instructions for treatment. For example, “Do you understand how to take your medication safely and according to instructions?”

FLPPS has declared CCHL a vital part of our local community organizations. If we can define social determinates that influence different populations’ health, we can start to decrease hospital stays and create healthier communities for people of all cultures and back- grounds. Over the next few months, The Arc Wayne will begin training staff and individuals to teach everyone what CCHL is and how we can create more culturally competent and health literate community members. 

If you have questions about CCHL, what it means, or how you can help infuse it into your work place, please feel free to contact Grete Steele De Torres, our CCHL Operations Specialist at The Arc Wayne. We would love to share how you can make a difference in your community by being more culturally competent and health literate. 

All week, The Arc Wayne has celebrated our greatest asset: employees. Our Human Resources department planned a week of themed days and gave away goodies to thank staff for all of the hard work and dedication they show to the individuals we support each and every day. 

It takes our team of more than 550 people to effectively and successfully operate The Arc Wayne day-in and day-out. We are thankful to have such a devoted team of that size. David Calhoun, The Arc Wayne's Executive Director, sent a message to staff at the end of the week thanking everyone for their work.

"I would like to take this opportunity with the ending of staff appreciation week to thank you on behalf of the Board of Directors and the Administration. Thank you for the dedication you provide to the hundreds of people we support each and every day. Without your commitment and hard work, we would not be the largest and best non-profit agency in the county. Our drive toward excellence through empowerment and opportunity makes The Arc Wayne a special place to work, and our team plays an absolutely vital role in accomplishing that for our community. Staff appreciation week may be only 5 days long, but it takes 365 days a year to successfully operate The Arc Wayne, and we appreciate your help in accomplishing that."

We hope you will help us in thanking our staff for helping connect individuals to a world of possibilities. 

Erie Shore Landing construction is officially wrapping up this week, and we are actively working toward being able to open our doors to the public. If you've heard about the project or have seen the transformation of our building, you're probably wondering, "What is Erie Shore Landing?" Hopefully this blog post can answer some of your questions about it, but feel free to contact us with any other inquires regarding the shops or the project as a whole. 

Erie Shore Landing is a retail business of The Arc Wayne consisting of four shops along the Erie Canal in Newark, as well as a learning academy. The shops include Erie Shore Cafe, Erie Shore Ice Cream, Erie Shore Printing, and a retail space that is available for a local business to rent out as a storefront. Our employees will be a mix of individuals with disabilities and those without in our community. We are excited to introduce dozens of new jobs for the Newark area.

All of the shops except Erie Shore Ice Cream will be open year-round. The ice cream shop will be seasonal and opening this spring. So far, we do not have a business renting the retail space, so it will be overflow seating for our cafe in the meantime. We are also hoping to have a kiosk where customers can buy local products and goods right in the store. This kiosk is still in the development phase and will not be open right away. 

Erie Shore Cafe will serve coffee, baked goods, sandwiches, wraps, paninis, and more. Our ice cream shop will serve both soft serve and hard ice cream. The printshop will continue doing business as usual, but we are also adding mailing services in the near future.

Erie Shore Learning is a training kitchen and conference room where individuals can learn the necessary retail, food preparation, and customer service skills they need to thrive in the Erie Shore retail shops. The learning academy is a first of its kind in the area, and we believe it will increase confidence in our employees and enhance your experience with us.

We are now hiring a retail manager who will then assist us in hiring more employees to work in the shops, so please check out our job postings later next month if you're interested in working with us!

We are planning an official opening date this winter, so stay tuned. Once the final preparations are completed, we will be sure to spread the word about when customers can come visit us! We hope you will join us that day. As we mentioned earlier, please feel free to reach out to us with any questions about the project.

Thank you for your support of our mission and wanting to help make a difference in your community. 

Last week we celebrated National Direct Support Professionals (DSP) Appreciation Week. With hundreds of DSP's working for The Arc Wayne, it's safe to say that the agency would not be able to function without the compassion and dedication of our direct support staff. Working one-on-one with many of the individuals The Arc Wayne supports allows our direct support staff to really connect with the individuals they spend time with and help accomplish day-to-day tasks.

At The Arc Wayne, we like to say, "They don't live where you work, you work where they live." Being a DSP in one of our houses is more than just doing a job – it's finding a family. When our staff eat, play games, go on outings, and help envision goals with the individuals of that house, it becomes much bigger than just "going to work." 

All of us here at The Arc Wayne know how dedicated, inclusive, and person-centered our DSP's are in order to provide the best care possible for the individuals we support. We thank you from the bottom of our hearts for all the long days, late nights, extra shifts, hard times, and moments of success that you experience every day. We appreciate you! 

Every year, Newark CSD recognizes an individual, group, or organization that the district feels is a champion for education in the community. This year, we were honored to receive the award at the start-of-the-year Superintendent's Conference. 

The Arc Wayne partners with Newark CSD to help provide services, service coordination and navigation, support, and advocacy for students. This year, the agency also sponsored Newark's Unified Basketball teams. These teams truly exemplified what we stand for as an organization by allowing students of all abilities to participate in a team sport. 

We want to extend our heartfelt thanks to this awesome district for giving us the Friend of Education award. We look forward to future partnerships to better the lives of students and others in our community. Best of luck to all students, teachers, and staff this school year!

In an era where people generally want to be more respectful and inclusive of different populations, it's sometimes hard to determine what the "right" thing to say is. To be quite honest, before I started working at The Arc Wayne, I struggled with deciding what I should and shouldn't say or ask to someone with a disability. I want to let all of you know the most important thing that I learned when talking with the individuals we support – they are just that: individuals. No two of them are the same, and they most definitely have their own personalities, interests, hobbies, and skills. 

Just because someone has different abilities, their importance in society is not diminished. I've met some of the most hard-working, kind-hearted people down in our Key Industries Workshop, in our IRA's, and out in the community. They want the same basic things we all want: a decent home, friends, family, a marriage, a good job, and the ability to take fun vacations. 

I'm hoping this advice regarding people-first language will be a launching pad for positive interactions between you and the individuals you interact with. If you take one thing away from this, let it be that someone's disability does not define who they are as a person and does not always prohibit him or her from accomplishing goals and reaching dreams.

So, what is people-first language? The Arc defines it this way: "People First Language puts the person before the disability, and describes what a person has, not who a person is. Using a diagnosis as a defining characteristic reflects prejudice, and also robs the person of the opportunity to define him/herself."

For example, if someone is diagnosed with Autism Spectrum Disorder, it would inappropriate to label him or her as "autistic." It would be better to say, "He or She has Autism." This emphasizes the person rather than the disorder. It's something that is a part of the person, not the person as a whole.

Almost 1 in 5 Americans has a disability – making it the largest minority population. It is also one of the most diverse minority populations because it is made up people from all cultures, backgrounds, races, and ethnicities. Disabilities don't discriminate, and neither should we. Individuals with disabilities are friends, coworkers, moms, dads, neighbors, daughters, sons, teachers, students, brothers, and sisters. All it takes is a genuine smile and an understanding that a disability does not define someone.

At The Arc Wayne, we are dedicated to helping individuals with disabilities feel welcomed and included in our communities. Thank you for your help and support with this goal. 

We are so excited at how much positive feedback the #SeeMe campaign has received over the last week. It's reassuring to know that we are nestled in such a supportive, inclusive community and that we are surrounded by people who want to make this a better place to live, work, and play for individuals with disabilities. We couldn't do what we do every day without our community's support. Thank you.

If you're wondering what the deal is with all of these #SeeMe posts, you're probably not alone. To explain properly, let me first explain the rebranding efforts that made a huge impact on the campaign. 

As you probably know, Wayne ARC is now The Arc Wayne. This is an effort to join hundreds of state and local chapters across the United States who have branded with The Arc – the largest national community-based organization advocating for and supporting individuals with developmental and intellectual disabilities and their families. 
 
The Arc Wayne decided to align with The Arc to strengthen our voice as we continue to find alternative financial support and create innovative programs and services for the individuals The Arc supports.

That being said, we wanted to make sure we weren't just saying that, but actually showing it in our communities. This was the genesis of the #SeeMe campaign. We wanted people to see and accept individuals with disabilities in all areas of our villages, towns, and businesses. We wanted everyone to know how special we think each and every individual we serve is.

In addition to the social media posts, we have also partnered with local businesses across Wayne County to show our support. Check out our billboards on Rt. 104 in Williamson and Rt. 31 between Newark and Lyons for a photo of our beloved David thanks in part to Lamar Advertising. Love coffee? Visit ​Imprint Coffee Roasters, Firewall Coffee Hall, or Mi Cafe Con  Leche Coffee Shop to find The Arc Wayne coffee sleeves. Need something stronger? Visit Parker's or Twisted Rail Brewing Company to find The Arc Wayne coasters under a drink. Have kids? Load up the car and visit Chill & Grill, Mr. Coolee's, or Orbaker's for orange and yellow sprinkles on an ice cream cone – even the big kids will enjoy this one. 

Whether you know someone personally, or you've just seen a photo on Facebook, we can all show respect for individuals with disabilities. Please share your stories with us on social media or in the comments of this blog! We love to see how you're making a difference in your community. Thank you for following along with us and helping create a more inclusive environment for what we believe is an amazing population of people. 

Click on the icons below to see more from the #SeeMe campaign.