Assessing NY’s Response to Covid-19

The NYS Developmental Disabilities Advisory Council (DDAC) was charged with preparing a report to the legislature assessing New York State’s response to Covid-19 for people with intellectual and developmental disabilities (IDD) and provide recommendations on improvements to better address the needs of people with IDD in future emergencies. The NYS Developmental Disabilities Planning Council(DDPC) was asked to assist the DDAC in the preparation of this report. This report was sent to the Governor and the legislature on November 17, 2022.

The DDPC engaged a significant number of stakeholders – over 2,000 self-advocates, parents and providers – to hear their stories of how the pandemic and the state’s response impacted them. Based on this vast amount of input, as well as extensive research and analysis of data, the DDAC’s findings include the following:

1. People with IDD and their families living in the community felt largely ignored by the state in its response to COVID.
2. The Office of People with Developmental Disabilities (OPWDD) COVID guidance often fell short and was not timely to address the needs of the providers and the people they serve.
3. OPWDD’s guidance was often difficult to access and understand.
4. Underserved communities were mostly overlooked by the state in response efforts.
5. Non-profit providers were often not able to obtain necessary PPE from the state at the onset of the pandemic, putting staff and the people they serve at risk for COVID.
6. Staffing shortage and program closures had a major adverse impact on individuals with IDD and caregivers.
7. The hospital discharge policy may have inadvertently accelerated the spread of COVID for the IDD population living in congregate settings.
8. People with IDD were initially denied necessary supports while hospitalized which impacted their ability to access appropriate treatment.

To improve the State’s response efforts to the IDD population. the DDAC’s recommendations include the following:

Create an Emergency Management Plan for the IDD community representing the racial, ethnic and linguistic diversity of NYS.

Require mandatory training for all first responders to appropriately respond to the unique needs of people with IDD.

Improve data collection and access to data during an emergency.

Address the chronic DSP workforce crisis by creating a task force to examine barriers and recommend actionable short and long term solutions.

Reduce reliance on congregate care setting for people with IDD by examining regulatory, financial and administrative barriers to offering more independent housing options.

Make telehealth, telemedicine and virtual programming permanent, ongoing services when it is appropriate and develop best practice guidance for providers.

NYS Developmental Disabilities Planning Council

99 Washington Ave
Suite 1230
Albany, New York 12210

Phone: 518-486-7505
Email: information@ddpc.ny.gov

Dear Friends and Colleagues,

Governor Kathy Hochul today announced that the New York State Office for People With Developmental Disabilities has released our 2023-2027 Strategic Plan which will guide our agency as we work to strengthen supports and services for New Yorkers with developmental disabilities. The Strategic Plan is truly the work of hundreds, if not thousands of dedicated people from all across our state. It represents our collective goals and objectives for moving our service system forward and transforming it to better meet the changing needs of the people we serve, while prioritizing equity and ensuring sustainability.

I am so pleased to have spent the past year getting to know so many of you and have been fortunate to spend time with self-advocates, family members, providers and their staff, as well as many OPWDD team members in the regions statewide. Each and every person I met contributed to this important guiding document, and I hope you will find your voice within its pages.

Having collected initial input in 2021 through regional forums and targeted discussions, followed by feedback on our draft plan this year, we have honed all that we heard into three high level goals. Accompanying each goal are a range of supporting objectives and initiatives, projects and improvements that, with your support and collaboration, we will pursue over the next five years.

The Strategic Plan declares our top priorities, names the challenges we face and commits us to specific actions we will undertake together to improve the support we provide today and into the future. The plan we’ve released today is the result of many months of collaboration and dialogue. As you read it, I hope you feel excitement for all we want to accomplish.

Thank you for being part of the tremendous effort behind our 2023-2027 Strategic Plan. I look forward to our continued work to strengthen, grow and improve all we do in support of New Yorkers with developmental disabilities.

Sincerely,

Kerri E. Neifeld
Commissioner 

 

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YouTube Again https://www.youtube.com/watch?v=nKloTQ5K_8k Helpful Guides used during Town Hall: Organizational Chart: Click Here: New York Disability Advocates (NYDA) summary of their “ASK” for 2023-24 Budget. Click Here:

Dear Friends and Colleagues,

Thirty-five years ago, on this day, the Willowbrook State School was shuttered, signaling a new day for people with developmental disabilities. It was the courageous reporting of Geraldo Rivera, aided by a brave young named Bernard Carabello, that led to its closure by exposing the failure of a system that relied heavily on mass institutionalization of people with disabilities. Mr. Rivera’s expose 50 years ago launched a multi-year effort to change the service delivery system, leading ultimately to the closure of 20 institutions across New York State over 30 years in favor of community living.

The history and the mission of the Office for People With Developmental Disabilities is irrevocably intertwined with the history of the Willowbrook State School. This agency was born out of the strong and heroic advocacy of family members and people with developmental disabilities to ensure better treatment and better services for people within their communities and ultimately led to the end of institutionalization.  

The opening of the Willowbrook Mile today preserves this history for future generations so that we may never forget what happened, nor take for granted the actions that led to the school’s eventual closure and, ultimately, the integrated and community-based living opportunities that exist for people with developmental disabilities today.

As we continue to remember Willowbrook, we are reminded of how very important our ongoing advocacy is. We need continued advocacy from people with disabilities, their families, our provider partners and those of us working in state government service to keep our system safe, accountable and responsive to the needs of people with developmental disabilities.

So, as we reflect on this Anniversary and the opening of the Willowbrook Mile, I ask that you join me in remembering our history and continuing to use your voices to help pave the path forward. While we have come a long way, there’s so much further we can go. Let’s work together to secure the support and the funding we need to ensure that all the people we support can live rich lives and realize their full potential. Bernard, the many brave families who fought to close Willowbrook and similar institutions and so many others who have followed in their footsteps have shown us what is possible. It is up to us all to continue pressing forward to achieve what is possible for people with developmental disabilities both now and in the future.

Sincerely,

Kerri E. Neifeld
Commissioner

Watch the Remembering Willowbrook series

Dear Colleagues and Friends,

In accordance with Governor Hochul’s announcement lifting the requirement for masks to be worn in certain facilities, OPWDD is revising its COVID-19 guidance. 

As of September 7, 2022, OPWDD will no longer be requiring masks to be worn in its certified or operated facilities, with the exception of Specialty Hospitals.  Masking is also no longer required during transport.  As set forth in the attached guidance, masking may still be required in certain individual circumstances, such as when a person or staff is recovering from COVID-19 or is suspected of having COVID-19. 

This guidance also more clearly explains OPWDD’s isolation and quarantine guidance and its applicability in OPWDD’s various certified settings.

This guidance will supersede the following guidance documents:

• Post State of Emergency COVID-19 Guidance for OPWDD Certified, Operated, and/or Funded Facilities and Programs – Issued September 15, 2021;
• Frequently Asked Questions (FAQ) About OPWDD’s Emergency Regulation 14 NYCRR Section 633.26 Mandatory Face Coverings in OPWDD Certified Services and Facilities – Issued September 24, 2021; Revised June 30, 2022
• Revised Protocols for the Implementation of Isolation and Quarantine of Individuals in OPWDD Certified Facilities Following COVID-19 Exposure or Infection – Issued July 8, 2022.

Thank you for your continued partnership as we continue to ensure health and safety for all.

Sincerely,

Kerri E. Neifeld
Commissioner

Low pay and difficult working conditions are exacerbating the widespread closure of facilities that serve disabled individuals

ALBANY — A staffing crisis at residential facilities that serve those who are intellectually and developmentally disabled is costing more than $100 million a year to handle the fallout from the flood of individuals leaving those jobs, according to a recent survey conducted by New York Disability Advocates.

The survey captured more than 50 percent of the industry’s stakeholders, confirming that low pay and difficult working conditions are exacerbating the widespread closure of facilities, including many run by the state Office for People with Developmental Disabilities.

“The statistics are rather sobering,” said Erik Geizer, CEO of the Arc New York, the state’s largest nonprofit organization serving people with intellectual and developmental disabilities.

Geizer noted that there is a 35 percent annual staff turnover rate and that is being compounded by the roughly 20 percent vacancy rate for the “direct support professionals” who provide the unique services.

In addition, 40 percent of providers have closed or reduced programs in the past several years.

“That’s pretty sobering because the number of people with intellectual and developmental disabilities is pretty stable. It’s not going down,” he said. “This is as bad as I’ve seen the field. I’ve never seen things so bad.”

Geizer said the quality of care is also suffering as a result of the labor shortage — in an industry where clients do better when the workers helping them are familiar faces. The program shutdowns also have led to many parents and caretakers of developmentally disabled individuals needing to quit their jobs to care for their loved ones.

With so many workers leaving the industry — where the rate of pay is in line with fast-food restaurants and retail stores — the additional costs of retraining new workers, including many of whom may not remain the jobs, is depleting the limited amount of money set aside for caregiving.

“We don’t often talk about the actual cost of our staffing crisis,” said Tom McAlvanah, president of the New York Disability Advocates and executive director of the Interagency Council of Developmental Disabilities. “Provider agencies are spending millions of dollars to combat turnover of direct support staff. Investing those resources into competitive wages and workforce initiatives that promote retention of essential staff would help stabilize our system of supports and ensure continuity of care for New Yorkers with I/DD.” 

In January, Gov. Kathy Hochul’s administration announced it had applied for $2.2 billion in federal aid to strengthen the home care workforce, including implementing a “data-driven” strategy for recruiting OPWDD workers.

According to the Public Employees Federation, OPWDD’s civil service workforce declined by more than 10,000 workers — to just under 20,000 — between 1990 and last year. But most of the care in that industry is provided by non-profit service agencies.

OPWDD has recently acknowledged that “like most human services organizations across the country” it is facing “a workforce shortage of crisis proportions worsened by the COVID pandemic.”

The agency said it has needed to implement “emergency measures to ensure the safety of people living in a small number of group homes that are unable to retain or recruit sufficient staffing levels.”

In the past three years, 130 OPWDD-operated group homes across the state were “temporarily suspended” due to staff vacancies, the agency said. The non-profit organizations providing those same services have been forced to implement similar shutdowns and suspension of programs.

Group home workers have said mandatory overtime has contributed to additional departures — retirements and resignations — and it’s not unusual for some employees to be required to work shifts of more than 30 hours.

In addition to paying out more than $1 billion in bonuses to workers employed by nonprofit providers — money from the American Rescue Plan Act — the state agency also has added a 5.4 percent “cost-of-living adjustment for non-profit provider agencies to address inflation and other fiscal pressures, such as the need to enhance direct care, support and clinical staff compensation.”

But stakeholders in the industry say those measures have not led to any significant shifts in the workforce crisis.

Written By

Brendan J. Lyons

Reach Brendan J. on

Brendan J. Lyons is a managing editor for the Times Union overseeing the Capitol Bureau and investigations. Lyons joined the Times Union in 1998 as a crime reporter before being assigned to the investigations team.