CEO Susan Constantino fights for DSPs at workforce hearing

Susan Constantino, CEO of CP Unlimited and President and CEO of CP of NYS, joined other executives, advocates, DSPs, and individuals with I/DD at a public hearing to evaluate the current workforce challenges of the I/DD service delivery system on Tuesday, September 14.

“What has the impact of our workforce crisis been on the people we support? Less staff who know and can provide the highest quality care/support to meet people’s unique needs. Higher turnover, causing lack of continuity in care and supports, thereby potentially decreasing the quality of care we offer. Fewer homes and programs available to support growing numbers of people and their families in need,” Constantino said to Senator John Mannion and members of the Senate Standing Committee on Disabilities.

A recent survey by New York Disability Advocates found that nearly 74% of DSP provider agencies experienced a higher vacancy rate than before the pandemic. Nearly half of surveyed agencies reported that they had to close programs or reduce operations due to staffing shortages. Unfortunately, without adequate funding provider agencies cannot provide wages competitive with sectors such as food service and retail to entice new workers.

The DSP workforce emergency affects continuity and consistency in the lives of the people being served. DSP workforce instability also affects provider agencies, as they struggle to maintain an adequate workforce and living wage for the 97,000 DSPs and ensure positive outcomes for the I/DD individuals to whom they provide critical supports and services.

Twenty people delivered testimony to the Senate Committee, including Jeff Paterson, Executive Director of CP Affiliate Empower in Western New York, and several of CP’s other partners in NYDA.  However, Constantino’s affiliation with CP Unlimited and CP of NYS gives her the unique perspective of seeing the ever-increasing workforce crisis through the focused lens of a direct service provider as well as the global view of a statewide advocacy association.

“My perspective is that of both a provider but also from our Affiliates’ collective experience in different locations across the State during the ever-increasing workforce crisis,” she said, noting that CP Unlimited offers residential, day, clinic, and other programs in and around NYC and employs more than 2,500 people. CP Affiliates statewide support almost 100,000 people with disabilities and their families and employ more than 19,000 people.

“It’s important to recognize that without a workforce the supports and services critical to people with I/DD don’t happen. People are not able to get up in the morning, bathe, eat meals, make doctor appointments, go to work – all the activities of daily living they might need assistance with don’t happen,” she said. “Families that were able to go to work because the supports were there are unable to go to work when those staff don’t show or aren’t there. And we, as a society, lose out because we’ve failed to ensure that the quality of life of those in need has been maintained – in fact, without a workforce and investment in workforce, we’re making a decision to discount the needs of people with I/DD across the State.  And we can’t let that happen.”

Constantino lambasted the State for moving forward with its plans to implement a cut of $238 million from providers for vacancy factor calculations.

“This is absolutely unconscionable and unnecessary,” she said. “Our providers must maintain operations of their homes even when the residents are home for visits with family, on vacation, or in the hospital or other health care facility. Suggesting that there’s something wrong with essentially keeping the lights on at the person’s home while they’re away demonstrates either a complete lack of understanding of the operations of these homes or perhaps something more punitive in motivation – either way, these cuts make no sense.”

Constantino ended on a note of partnership and optimism, offering solutions to the workforce crisis such as tax credits, career ladders for direct support professionals, and investment in the I/DD workforce to reach a living wage. She asked the State to be a partner in ensuring our workforce is valued and recognized for the critical role they play in so many people’s lives across New York State.

“We are looking for help in righting the ship – reestablishing the connection with the State to ensure our workforce’s efforts are prioritized and recognized,” she said. “We need a living wage – which means enough money from working one job with regular hours to support the housing, food, transportation and other fundamental needs of our workforce.  Any shortfall in that goal will not work.”

Remembering longtime advocate and friend, Duane Schielke

On August 31, the world lost a tireless advocate for people with disabilities when our friend and colleague Duane Schielke passed away unexpectedly.

Duane was a selfless man and truly lived his life in the service of others. Following duty as an Army Field Artillery Section Chief in South Vietnam in 1973, he began working as a direct care counselor in a residence for people with disabilities while studying rehabilitation therapy and psychology at SUNY Buffalo. Duane then worked his way up to the position of Executive Director of the organization that would come to be known as Aspire of Western New York.

After a long and storied career at Aspire, Duane became the Executive Vice President, Chief of Development and Quality Management of CP of NYS, overseeing the growth of programs, services and new facilities, quality management activities, staff development and training, community support services and volunteer services.

Duane devoted his entire professional life to promoting and encouraging individuals with disabilities to live the most fulfilled and productive lives possible. He served on numerous government task forces, councils and commissions of the NYS Department of Health, Developmental Disabilities Planning Council and OPWDD. Commendations include CP of NYS’s Daniel Wieder Award for Professional Leadership (1995), and the Inaugural Niagara County Community College Distinguished Alumni Award in 1988. He is the co-author of “The Triple Stress Jeopardy of Agent Orange Class Members” in The Legacy of Vietnam and Their Families, Survivors of War: Catalysts for Change, 1995.

“Duane was unique in so many ways, always pushing himself and others to reinvent disability supports and services,” said Mike Alvaro, Executive Director of CP of NYS. “His vision and efforts were far reaching, improving the lives of so many people in the state. His passion, his insights, and his smile will be missed by all who had the honor of knowing him.”

“The I/DD community has lost a true champion in Duane Schielke,” said Susan Constantino, President and CEO of CP of NYS. “No matter what area of the disabilities field, Duane would always be there to get the job done. He was a valued member of my team, a true advocate, and a dear friend. Life without Duane will certainly be different, and he will be missed.”

Services will be held at: Sherri Bream, Funeral Home, 4521 Main Street, Gasport, New York 14067

The wake will take place Thursday, Sept. 9, 4-7 p.m.  The funeral will be Friday, Sept 10, 1 p.m. with a reception immediately following.

The family has requested that in lieu of flowers donations be made in Duane’s memory to:

United Cerebral Palsy Associations of NYS

40 Rector St., 15th Floor

New York, NY 10006

There will be a memorial service for Duane at the end of September, date, time and location to be determined.

DOH: Hospitals and long-term-care facilities will require employees to get vaxxed

Please note that CP State is seeking clarification on how this may impact our field now that this step has been taken.

Department of Health Issues Section 16 Orders to Hospitals and Long-Term Care Facilities Requiring Policy to Ensure All Employees Are Vaccinated

First Dose Required by September 27

Department of Health Authorizes Third Dose for Immunocompromised New Yorkers

Governor Andrew M. Cuomo announced recently that all healthcare workers in New York State, including staff at hospitals and long-term care facilities (LTCF), including nursing homes, adult care, and other congregate care settings, will be required to be vaccinated against COVID-19 by Monday, September 27. The State Department of Health will issue Section 16 Orders requiring all hospital, LTCF, and nursing homes to develop and implement a policy mandating employee vaccinations, with limited exceptions for those with religious or medical reasons. To date, 75% of the state’s ~450,000 hospital workers, 74% of the state’s ~30,000 adult care facility workers, and 68% of the state’s ~145,500 nursing home workers have completed their vaccine series. Lt. Governor Kathy Hochul’s administration was briefed prior to the announcement.

“When COVID ambushed New York last year, New Yorkers acted, while the Federal Government denied the problem,” Governor Cuomo said. “Now, the Delta variant is spreading across the nation and across New York — new daily positives are up over 1000% over the last six weeks, and over 80 percent of recent positives in New York State are linked to the Delta variant. We must now act again to stop the spread. Our healthcare heroes led the battle against the virus, and now we need them to lead the battle between the variant and the vaccine. We have always followed the science, and we’re doing so again today, with these recommendations by Dr. Zucker and federal and state health experts. But we need to do more. I have strongly urged private businesses to implement vaccinated-only admission policies, and school districts to mandate vaccinations for teachers. Neither will occur without the state legally mandating the actions — private businesses will not enforce a vaccine mandate unless it’s the law, and local school districts will be hesitant to make these challenging decisions without legal direction.”

Governor Cuomo also announced that the Department of Health has authorized a third COVID-19 vaccine dose for New Yorkers with compromised immune systems, following the Centers for Disease Control and Prevention’s recommendation last week. Eligible New Yorkers can receive their third dose 28 days after the completion of their two-dose vaccine series, effective immediately.

The CDC is currently recommending that moderately to severely immunocompromised people receive an additional dose, including people who have:

  • Been receiving active cancer treatment for tumors or cancers of the blood;
  • Received an organ transplant and are taking medications to suppress the immune system;
  • Received a stem cell transplant within the last 2 years or are taking medicine to suppress the immune system;
  • Moderate or severe primary immunodeficiency (such as DiGeorge syndrome, Wiskott-Aldrich syndrome);
  • Advanced or untreated HIV infection;
  • Active treatment with high-dose corticosteroids, cancer chemotherapy that causes sever immunosuppression, or other medications that may suppress your immune response.

New Yorkers should contact their healthcare provider about whether getting an additional dose is appropriate for them at this time.

New York State Health Commissioner Dr. Howard Zucker said, “While we have made tremendous progress in getting New Yorkers vaccinated, this pandemic is far from over and more must be done. The data and science tell us that getting more people vaccinated as quickly as possible is the best way to keep people safe, prevent further mutations, and enable us to resume our daily routines. This mandate will both help close the vaccination gap and reduce the spread of the Delta variant. I want to thank all New York State’s healthcare workers for stepping up once again and showing our state that getting vaccinated is safe, easy, and most importantly, effective.”

These steps follow Governor Cuomo’s August 2 announcement that MTA and Port Authority employees working in New York facilities will be required to be vaccinated for COVID-19 by Labor Day, and his July 28 announcement that state employees and patient-facing employees in state-run hospitals will be required to get vaccinated for COVID-19 by Labor Day. State employees who choose to remain unvaccinated will be required to undergo weekly COVID testing.


Workforce crisis events draw hundreds

On Wednesday, members of New York Disability Advocates (NYDA), The Alliance of Long Island Agencies (ALIA), and The Long Island Advocacy Network for the Developmentally Disabled  (LIANDD) were joined by more than 300 Direct Support Professionals (DSPs), New York State legislators, self-advocates, parents and other stakeholders to address the state’s workforce crisis of Direct Service Professionals (DSPs) who provide critical life support and services to more than 140,000 individuals with intellectual and developmental disabilities (I/DD).

The event was attended by Senator Mario Mattera, Assemblymember Melissa Miller, Assemblymember Michael Montesano, Robert McGuire, Executive Director, Cerebral Palsy Assoc. of Nassau County, Walter W. Stockton, CEO, Independent Group Home Living Program, who raised awareness regarding the workforce crisis the I/DD sector is facing to identify solutions. Video of the event can be found at

“I believe strongly in providing quality care for New Yorkers with intellectual and developmental disabilities (I/DD) and gladly lend my support to Alliance of Long Island Agencies and its effort to solve this workforce crisis,” said Assembly member Charles D. Lavine.

“My son and I rely on the Direct Service Professionals at Cerebral Palsy of Nassau County for all of his daily needs, including feeding, bathing, and toileting. They provide essential, life-changing services for people with disabilities. New York State needs to fund a competitive wage for DSPs,” said Bob Masterson, a parent and former Direct Support Professional.

NYDA, ALIA, and LIANDD are calling on the state to address this crisis by establishing a living wage for DSPs, creating credit and career ladders for those going into the direct support field, and professionalizing the DSP role by creating a unique labor code and advanced training opportunities.

“Eleven years ago, New York State changed the name of the Office of Mental Retardation and Developmental Disabilities to the Office for People with Developmental Disabilities. Why? To erase the word ‘retardation’ out of the agency’s name, out of respect for those it serves.” said parent Terri Manzione. Yet in the 11 years since that name change, there has been a deterioration in the access to, the quality of, and the funding for the very humans that New York State claimed to be honoring with that name change. You cannot erase the history of this past dark decade and erase the mess we’re in today by simply ignoring it!”

The results of a recent survey conducted by New York Disability Advocates found that nearly 74% of DSP provider agencies experienced a higher vacancy rate than before the pandemic. Nearly half of surveyed agencies reported that they had to close programs or reduce operations due to staffing shortages. Unfortunately, without adequate funding provider agencies cannot provide wages competitive with sectors such as food service and retail to entice new workers.

The DSP workforce emergency affects continuity and consistency in the lives of the people being served. DSP workforce instability also affects provider agencies, as they struggle to maintain an adequate workforce and living wage for the 97,000 DSPs and ensure positive outcomes for the I/DD individuals to whom they provide critical supports and services.

Help people with disabilities be better understood

Project Euphonia is a Google Research project started two years ago with the goal of helping people with speech impairments communicate faster and gain independence. A few months ago, they reached a milestone of 1,000 hours of recordings from 1,000 participants! Their next goal? Collect speech samples from an additional 5,000 participants! For the type of research Project Euphonia is doing, having data from a large number of speakers representing a broad spectrum of speech characteristics helps the most. Learn how you can help – and maybe make some money recording speech samples for Project Euphonia – by visiting
DSPs and other staff can get paid for their time too!

CP State, NYC Ballet bring smiles and moves to people with disabilities

The New York City Ballet (NYCB) conducted a free dance a workshop for children with disabilities on Saturday, July 17 at the National Museum of Dance. The workshop was led by a pair of NYCB Dancers and included choreography inspired by NYCB’s A Midsummer Night’s Dream.

It was great to be back in person after holding a virtual workshop last year! Check out some pictures from the event:

NYC Ballet hosting access workshop on July 17

We are happy to announce that the New York City Ballet (NYCB) will conduct a free dance a workshop for children with disabilities on Saturday, July 17, from 10-11 a.m. at the National Museum of Dance.  The workshop last year was held virtually due to COVID, but this year we are again holding the workshop in person!

This one-hour workshop will be co-led by a pair of NYCB Dancers and will include a warm-up and choreography inspired by NYCB’s A Midsummer Night’s Dream. Modifications and movement options will be offered throughout, and movers of all abilities and their siblings are welcome. Unlike in the past when we’ve had medical/PT/OT “buddies” pair up with our young dancers, for this workshop we will be encouraging a parent/guardian of the participant to join the workshop in offering support for their child.  Click here for more information and to register.

In addition, the Saratoga Performing Arts Center (SPAC) will again offer a limited number of complimentary tickets to either the matinee or evening performance on Saturday. Up to 4 complimentary tickets will be available to each participant.   Information to request these tickets is in the “checkout” section of the registration.

Please share this information with individuals and families that may be interested in attending. 

The Workshop and Ballet tickets are FREE, so we hope to see many of you on the 17th

OPWDD emergency measures no longer in effect

Late Friday, July 2, OPWDD Commissioner Theodore R. Kastner issued the following letter stating guidance documents related to Visitation, Community Outings, Day Services and Staffing Management are no longer in effect. Revised guidance is linked below.

Dear Friends and Colleagues,

As you know Governor Cuomo recently announced that the state of emergency that was in effect during the COVID-19 public health emergency has come to an end.  And while this does not mean that COVID-19 is no longer a threat, it does mean that many of the emergency measures issued by the state and its agencies, including OPWDD, are no longer in effect. It also means that many of the public health-related restrictions that were that were imposed to keep the people we support safe can finally be relaxed.

As of today, guidance documents related to Visitation, Community Outings, Day Services and Staffing Management are no longer in effect.

Below are two new guidance documents which are effective as of today:

Post State of Emergency COVID-19 Guidance for OPWDD Certified, Operated, and/or Funded Facilities and Programs

Revised Interim Guidance Regarding the Delivery of Services Through the Use of Telehealth Modalities by Facilities and Programs Certified or Operated by OPWDD During the COVID-19 Federal Public Health Emergency

We know that this has been an extremely difficult time for the people we support, and the family and staff who support them. Throughout the last year and a half, this agency has appreciated your patience, your advocacy, and your unwavering commitment. We look forward to partnering with you as we get back to the business of resuming many of the long-awaited activities that had to be put on hold during this crisis.


Theodore R. Kastner, M.D, M.S.

Study: Intensive Therapies help children with spastic CP

 In a landmark research study on eighty-two children with spastic cerebral palsy (CP) on one side of the body, researchers at Burke Neurological Institute, Teacher’s College-Columbia University, and Weill Cornell Medicine learned that two intensive training therapies improved hand and arm function, allowing children to learn new, long-term life skills regardless of how the injured brain had re-wired itself.

The study represents a significant breakthrough in the treatment of CP, the most common movement disability in childhood ( CP is caused by damage to the developing brain before, during or shortly after birth. It affects a person’s ability to control his or her muscles and often leads to impairments in mobility or movement. In children with unilateral spastic CP, one side of the body is most affected.

The study focused on children who received either HABIT (Hand-Arm Bimanual Intensive Training) or CIMT (constraint-induced movement therapy), two upper body therapy techniques that have been found to be effective in teaching new skills to children who have CP. The therapies were given by trained therapy teams during a ninety hour, three-week long “day camp” setting (six hours per day, five days per week). The study demonstrated that both intensive therapies can lead to long-term improvements in hand and arm function in children with CP, regardless of how each child’s brain was wired.

Thirteen-year-old Allie Fowler of Chester, PA, participated in the study when she was nine years old. She was born with CP that affects movement on the right side of her body. “Hand camp was so much fun, and my hand got a lot stronger,” Allie recalled. “Even when things got hard, I kept trying because I knew that this research would help other kids with CP around the world.”
Allie’s mom, Danielle Fowler, also recalled Allie’s progress. “It was amazing to see my daughter’s hand function improve so dramatically during the trial, especially after her progress had plateaued in a traditional occupational therapy program. She was able to master some tasks that she had previously struggled with, and she had a lot of fun while doing it.”
This clinical trial arose from nearly two decades of work on intensive therapies, led by Dr. Andrew Gordon at Teachers College-Columbia University where the treatments were conducted. “Early studies suggested that some children were less likely to benefit from intensive rehabilitation, depending on how their brains had reorganized. This new study proves that assumption wrong,” Dr. Gordon stated.
“The research showed us that the motor system exhibits an extraordinary capacity to adapt,” stated Kathleen Friel, Ph.D., the lab director overseeing the study at Burke Neurological Institute. “We were pleased to finally acquire hard data showing that intensive hand therapies improve a child’s ability to move, play, learn and progress, no matter which type of brain connectivity pattern they had.” Friel, who has CP herself, also noted that the children retained most of their new therapeutic skills six months after the trial.The clinical trial was funded by a grant from the NIH. The complete research was published in the May 2021 issue of Frontiers in Neurology, Volume 12, Article 660780. The full text can also be found on PubMed.

About Burke Neurological Institute (
The Burke Neurological Institute (White Plains, NY) is a non-profit research institute focused solely on the discovery of treatments that repair neurological disability caused by stroke, Alzheimer’s Disease, Parkinson’s Disease, traumatic brain injury, spinal cord injury, and retinal degeneration diseases. The Institute is an academic affiliate of Weill Cornell Medicine and collaborates with leading neuroscientists world-wide to transform groundbreaking research into treatments that help people walk, talk, see and remember again.
For More Information:

Contact: Christine E. Hughes, VP of Advancement, Burke Neurological Institute

Phone: (914) 368-3142 | Email: | Website:


Contact: Kathleen Friel, Ph.D, Lab Director, Burke Neurological Institute

Phone: (914) 368-3116 | Email:  | Website:


Contact:  Andrew M. Gordon, Ph.D., Professor of Movement Science and Neuroscience & Education, Teachers College, Columbia University
Phone: (212) 678-3326 | Email: | Website:

Governor Cuomo announces end of Temporary Disaster Emergency

Governor Cuomo announced at his press briefing today that the Temporary Disaster Emergency established by Executive Order 202 and subsequent Executive Orders issued in response to the COVID-19 crisis will end effective tomorrow, June 24. This will end the suspensions and modifications of law, and all directives contained in the Executive Orders relating to the State’s Disaster Emergency.
The interim guidance issued by OPWDD and the COVID-19 reporting requirements are not dependent upon the continuation of the state of emergency, and remain in place for the time being. The Federal Centers for Disease Control and Prevention (CDC) guidance requiring masks for unvaccinated individuals, and for all individuals on public transportation and certain other settings also remains in place.
We recognize there will be many questions regarding shifting guidance for our field moving forward. We are seeking clarity on these changes, and will update you as soon as possible. In the meantime, we advise all Affiliates to adhere to the current OPWDD guidance and follow their existing COVID-19 protocols and procedures.