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.

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.