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.