We Want to Hear From You!

In-Person and Virtual Forums on OPWDD’s Strategic Plan Update
Dear Friends and Colleagues,This summer OPWDD has several stakeholder engagement opportunities underway to honor our commitment to work in partnership with you to move our system forward.Today, I am inviting everyone to participate in an opportunity related to our ongoing strategic planning activities. We are hosting in-person and virtual forums to share updates on the progress we are making toward reaching our 2023-2027 Strategic Plan goals and objectives and hearing your feedback.Below you will find the full schedule and registration information for the forums.The forums are open to everyone so I hope you will consider joining us at a forum in your area or an online forum from your own location to listen or to speak.Your voice continues to be important to our work and collaborative efforts to transform our system.Sincerely,

Kerri Neifeld
Commissioner
Date and TimeIn-Person or VirtualLocation
7/28, 1-3 pm
In- PersonUpstate
Caring Partners
1601 Armory Drive
Building C
Utica, NY  13501

7/31, 2-4 pm
In-Person
OPWDD Regional Office
1021 Broadway Street
Buffalo, NY  14212

8/3, 5:30-7:30 pm
In-Person
Westchester Institute for Human Development
20 Plaza West
Valhalla, NY  10595

8/9, 6-8 pm
In-Person
Metro NY DDSO
25 Beaver Street
New York, NY  10004

 8/10, 10 am-12 pm
In-Person
Long Island DDRO
415 Oser Ave.
Hauppauge, NY  11788

8/11, 2-4 pm
VirtualOnline

8/14, 2-4 pm
In-Person
The ARC Jefferson/St. Lawrence
420 Gaffney Drive
Watertown, NY  13601

8/15, 6-8 pm
Virtual Online 

Register for an In-Person ForumRegister for August 11, 2023 Virtual Forum
Register for August 15, 2023 Virtual Forum
To review the full 2023-2027 Strategic Plan, visit the strategic planning page Strategic Planning | Office for People With Developmental Disabilities (ny.gov) of the OPWDD website
To view this announcement in another language, visit 
We Want to Hear From You! Sign Up for In-Person and Virtual Forums on OPWDD’s Strategic Plan Update | Office for People With Developmental Disabilities (ny.gov)

Act now to support two critical disability rights issues!

This year, with your support, we defended cuts to Medicaid for the millions of people nationwide who rely on it. But our fight to protect and expand rights for people with intellectual and developmental disabilities isn’t over.

Please join us again in contacting your members of Congress about two priority issues.We desperately need more funding for HCBS so people with disabilities can access the vital care they need to thrive!
Medicaid home and community-based services (HCBS) play a vital role in helping people with disabilities live independently in the community—but a lack of funding for these services has left over 650,000 people stuck on waiting lists.Too many people are in limbo, unsure of when they will gain access to critical benefits, and many live segregated lives in the archaic institutions that still exist in 33 states.

Tell Congress to increase funding for HCBS so life in the community possible for all!
Act Now to Say #CareCantWait


Join us in demanding updates to SSI for the millions of people with disabilities who rely on it!Outdated rules to the Supplemental Security Income (SSI) program force millions of people with disabilities into poverty and prevent many others from getting married for risk of losing their much-needed benefits.Congress can change this by passing the SSI Savings Penalty Elimination Act, which would raise SSI asset limits for the first time in over 30 years and reduce marriage penalties related to SSI asset limits.Tell Congress to Update SSI!

Statement on the NYS Budget

A Message From the CEO

May 1, 2023
The final result of the New York State budget is deeply disappointing for New Yorkers with I/DD and the families and providers who support them. Below you will find The Arc New York’s official statement on the budget.Please share this message, and your own. Be assured, these statements do not mark the end of this year’s advocacy efforts. They mark the beginning of our fight moving forward. The budget is disappointing, but we have more to advocate for before this session ends. Our issues are better understood today, the voices of New Yorkers with I/DD are better heard, and we will mobilize to ensure the support of state leaders translates to action. 
The Arc New York Statement on the NYS BudgetThe final NYS budget was released today, and we are truly stunned by the inadequate investment in our service system. Nonprofit providers of supports and services for New Yorkers with intellectual and developmental disabilities will receive a mere 4% cost of living increase.This minimal increase covers less than half the increase in inflation over the past year. It does nothing to reverse our escalating workforce crisis. Most importantly, it does not address the erosion of care and supports for New Yorkers with I/DD.Paired with the reality of inflation, a 4% COLA has become essentially a 4.5% cut.New Yorkers with I/DD needed meaningful investment to sustain quality supports and care. Our staff needed meaningful investment to align their compensation with their skill and dedication. We called for an 8.5% COLA and a Direct Support Wage Enhancement to meet those needs. The legislature included an 8.5% COLA and no DSWE in their budgets. We advocated fiercely for that compromise to be realized, but the end result is entirely inadequate.We are grateful to the tireless advocates who raised their voices and their stories with passion and power. We thank our Champions in the legislature who fought for our families, staff, and the people we support.We are devastated that we have not been heard.State leaders put the care and quality of life New York’s most vulnerable citizens up for negotiation. Their final agreement continues a pattern of neglect we fought for decades to overcome.That fight is not over. We will grow louder. We will grow fiercer. We will not let New Yorkers with I/DD be forgotten.

State budget skirts major pay adjustment for mental health staffers

Advocates for the human services sector are disappointed by the state’s investments in the workforce, a key component of the struggling mental health system

ALBANY —  The state budget that’s expected to be finalized this week will include a raft of policies meant to address a struggling mental health sector, a stated policy goal for Democratic leaders this year as New York is grappling with workforce shortages and the post-pandemic effects on the industry. 

Gaps in the state’s historically underfunded mental health system have been a priority for Gov. Kathy Hochul, and one that remained relatively unscathed throughout the ongoing budget negotiations. Hochul touted the infusion of $1 billion into the sector last week as she announced a framework for this year’s state budget.

“Today marks a reversal in our state’s approach, a monumental shift,” Hochul said, pointing to a plan for additional psychiatric beds and increased outpatient services. 

But advocates for the human services sector said they are disappointed by the state’s investments in the workforce. The budget calls for a 4 percent cost of living adjustment, or COLA, for individuals who work in nonprofit programs. Those workers provide many of the same services as facilities run by the state workforce and are licensed and regulated through state agencies.

Hochul’s initial budget proposal had included a 2.5 percent adjustment. But many workers in the mental health sector and other human service industries decried that offer, swarming the Capitol in recent weeks to call for a much higher target of 8.5 percent.

The final agreement has left advocates frustrated, said Glenn Liebman, who leads the Mental Health Association of New York State. He said their original request was to keep funding for workers in lockstep with inflation that has challenged workforce retention.

“We’re concerned about their support,” Liebman said of the Legislature, which had originally included a much higher COLA in its one-house budgets than what ultimately was agreed on. “This will lead to people leaving our system and taking other jobs. Why would you stay in a job dealing with people with complex needs when you could go to a service industry job and make just as much money with a lot less pressure, right?”

Advocates have also pointed to potential disparity issues; much of the mental health workforce is staffed by women of color. The COLA will also affect direct care workers through other state agencies that provide services to the state’s most vulnerable residents, like those with disabilities or struggles with substance abuse, including the Office of Addiction Services and Supports, and the Office for People with Developmental Disabilities.

Liebman noted some positive developments, including a provision mandating that insurance companies reimburse school-based mental health clinics that provide outpatient care for school-aged children.

Some Democratic lawmakers are also cheering the inclusion of a task force studying “Daniel’s Law,” legislation that would empower mental health responders rather than police officers to show up to distress calls when people are experiencing a mental health or substance abuse crisis.

The budget allocates $1 million to establish a 10-member task force studying the roll out of the law. Members will solicit feedback statewide over the next two and a half years before submitting a report to the governor’s office with final recommendations on whether to implement the system statewide.

Named after a Rochester man who died during an encounter with police while he was experiencing a mental health crisis in 2020, the law aims to shift away from a reliance on police during emergency calls. In recent weeks, the measure had been bolstered by publicized incidents involving police force during non-emergency calls.

Bill sponsor state Sen. Samra Brouk, D-Rochester, has emphasized the connection between Hochul’s focus on public safety and mental health and the legislation, calling it a logical approach to lessen the likelihood of violent interactions between people with mental illnesses and police responders. 

The budget also calls for another task force studying maternal mental health, including postpartum depression and anxiety. Lawmakers have previously called attention to the high maternal mortality rate in the state; the state Department of Health has listed mental health as the third-leading cause of pregnancy-related deaths. 

An earlier version of this story misstated the parameters of Daniel’s Law in this year’s budget appropriations. It’s being launched through a task force with a $1 million allocation. 

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But advocates for the human services sector said they are disappointed by the state’s investments in the workforce. The budget calls for a 4 percent cost of living adjustment, or COLA, for individuals who work in nonprofit programs. Those workers provide many of the same services as facilities run by the state workforce and are licensed and regulated through state agencies.

Hochul’s initial budget proposal had included a 2.5 percent adjustment. But many workers in the mental health sector and other human service industries decried that offer, swarming the Capitol in recent weeks to call for a much higher target of 8.5 percent.

The final agreement has left advocates frustrated, said Glenn Liebman, who leads the Mental Health Association of New York State. He said their original request was to keep funding for workers in lockstep with inflation that has challenged workforce retention.

“We’re concerned about their support,” Liebman said of the Legislature, which had originally included a much higher COLA in its one-house budgets than what ultimately was agreed on. “This will lead to people leaving our system and taking other jobs. Why would you stay in a job dealing with people with complex needs when you could go to a service industry job and make just as much money with a lot less pressure, right?”

Advocates have also pointed to potential disparity issues; much of the mental health workforce is staffed by women of color. The COLA will also affect direct care workers through other state agencies that provide services to the state’s most vulnerable residents, like those with disabilities or struggles with substance abuse, including the Office of Addiction Services and Supports, and the Office for People with Developmental Disabilities.

Liebman noted some positive developments, including a provision mandating that insurance companies reimburse school-based mental health clinics that provide outpatient care for school-aged children.

Some Democratic lawmakers are also cheering the inclusion of a task force studying “Daniel’s Law,” legislation that would empower mental health responders rather than police officers to show up to distress calls when people are experiencing a mental health or substance abuse crisis.

The budget allocates $1 million to establish a 10-member task force studying the roll out of the law. Members will solicit feedback statewide over the next two and a half years before submitting a report to the governor’s office with final recommendations on whether to implement the system statewide.

Named after a Rochester man who died during an encounter with police while he was experiencing a mental health crisis in 2020, the law aims to shift away from a reliance on police during emergency calls. In recent weeks, the measure had been bolstered by publicized incidents involving police force during non-emergency calls.

Bill sponsor state Sen. Samra Brouk, D-Rochester, has emphasized the connection between Hochul’s focus on public safety and mental health and the legislation, calling it a logical approach to lessen the likelihood of violent interactions between people with mental illnesses and police responders. 

The budget also calls for another task force studying maternal mental health, including postpartum depression and anxiety. Lawmakers have previously called attention to the high maternal mortality rate in the state; the state Department of Health has listed mental health as the third-leading cause of pregnancy-related deaths. 

An earlier version of this story misstated the parameters of Daniel’s Law in this year’s budget appropriations. It’s being launched through a task force with a $1 million allocation. 

Albany Times Union

Rega Justin, Monday May 1, 2023

DiNapoli: Inconsistent Oversight and Guidance Left New York’s Group Home Residents at Risk During Pandemic

NEWS from the Office of the New York State Comptroller

Contact: Press Office 518-474-4015

Better Emergency Management Preparation Needed by OPWDD Before Next Public Health Crisis, Audit Finds

April 6, 2023

The Office for People With Developmental Disabilities’ (OPWDD) inadequate emergency management coordination left people living in group homes at risk during the onset of the COVID-19 pandemic, according to a new audit released today by New York State Comptroller Thomas P. DiNapoli. OPWDD reported 657 people died from COVID-19, and more than 13,000 contracted the virus in its residential programs from March 2020 to April 2022.

“Group homes are supposed to offer people with developmental disabilities safe places to live as independently as possible,” DiNapoli said. “Our audit found the Office for People With Developmental Disabilities did not issue timely, consistent guidance to the vast majority of their certified group homes. Inconsistent emergency management coordination and oversight put residents, families and staff in harm’s way. I urge OPWDD to implement our recommendations before the next public health emergency.”

DiNapoli’s audit found OPWDD did not provide consistent guidance to some 6,929 group homes across the state during the first wave of the deadly pandemic, though the audit did not establish a causal relationship between OPWDD’s actions and COVID cases. As explained by the department, certified facilities run by nonprofits (6,921), as opposed to those that are state-run (eight), are required to have their own emergency policies and procedures in place, even though they are home to 99% of the state’s 34,117 group home residents. In September 2020 and November 2021, OPWDD developed additional guidance, which covered COVID-19 emergency planning and response, but restricted their distribution to the eight state-run facilities, excluding the others.

While OPWDD’s emergency management and overarching emergency planning documents considered pandemics as a risk even before the COVID-19 pandemic, OPWDD did not take steps to ensure all group homes followed suit. The audit found that while many group homes had emergency response plans, they did not account for pandemics or emerging infectious diseases, while others referred staff to follow OPWDD’s guidance. This lack of effective emergency response plans at the onset of the pandemic led to difficulties in securing personal protective equipment (PPE), dealing with staff shortages and confusion and delays over how to isolate or quarantine individuals during the worst waves of COVID-19.

The audit noted OPWDD’s stockpile of PPE was exhausted early in the pandemic, and group homes had trouble getting masks and gowns on their own due to overwhelming demand. Masks were crucial to stopping the spread of COVID-19 and especially important in group homes settings, where clients often have multiple medical issues and staff typically cannot socially distance when helping individuals with bathing, dressing or eating. Staff at three of 16 group homes visited said they had to resort to reusing face masks and gowns at early stages of the pandemic.

The pandemic further led to staffing shortages at many group homes. To maintain minimum staffing levels, some frontline employees had to work across multiple group homes or work longer than normal shifts, risking increased physical and emotional fatigue, mental distress, and contracting COVID-19. Between March 2020 and November 2021, 81 group homes were closed or temporarily closed due to staffing shortages.

OPWDD recertifies group homes every three years, but according to the audit, their oversight needs improvement. While review of emergency response plans are part of the recertification process, OPWDD inspectors did not review plans for infection control practices or public health emergency response.

In May of 2020, OPWDD began COVID-19 surveys of group homes to better assess their response to the pandemic, but the audit found investigators only visited 22% of homes. Further, surveys often lacked meaningful observations, and staff at certified group homes were not required to take refresher trainings on infection controls.

DiNapoli’s audit recommends OPWDD:

  • Review and update the Emergency Management Operations Protocol and supplemental documents to ensure all group homes implement current policies and procedures in the event of another public health emergency.
  • Develop procedures to ensure that group homes’ emergency plans encompass planning for and responding to public health emergencies.
  • Ensure that monitoring and review protocols address well-developed infection control practices and are consistently applied when conducting reviews at homes.
  • Establish effective communication with staff responsible for infection control policies and procedures when deficiencies are identified.

While OPWDD expressed concern with the audit’s methodology, it agreed with many of the recommendations.

Audit
Pandemic Planning and Care for Vulnerable Populations


A Parent’s Plea to Remedy the DSP Workforce Crisis

By Karen Nagy | April 6, 2023

The day Sean was born was the best day of my life. I remember when I first saw him, I knew I would go to the ends of the Earth to ensure he had every opportunity to thrive. So, when we found out he had autism at two years of age, my priority was building a support system that would ensure his needs would always be met and that he would grow to his fullest potential for independence and success. 

Like 85% of New Yorkers with Intellectual and Developmental Disabilities (I/DD) and their families, we turned to our local nonprofit service provider, Wildwood Programs to help us establish that support system over his lifetime. Sean is now an adult and lives in a Wildwood residence. The incredible and dedicated Direct Support Professionals (DSPs) who support his intensive social, communicative, and behavioral needs are his lifeline and uplift him every day. Our child has blossomed into the bright, happy, and secure individual he is today because of the positive relationships he has formed with the committed DSPs who provide supervision, care, and emotional support.

Yet, the harsh reality is that it has become increasingly difficult for families like mine to access much-needed direct support services. For over a decade, New York’s nonprofit provider agencies have been plagued by chronic underfunding and cuts that have culminated in a dire workforce crisis. DSPs are leaving their positions in droves because nonprofit providers lack the funding to offer fair wages. Our family realizes that Sean’s progress would be lost without Wildwood’s most precious resource; its dedicated staff.

To put an end to this crisis once and for all, we need permanent, long-term solutions from the State. Governor Hochul and the State Legislature must include at least an 8.5% cost-of-living adjustment (COLA) increase in this year’s final budget to ensure agencies can keep up with rising operational costs and support their already severely depleted workforce. 

DSPs are highly skilled professionals that are responsible for providing crucial support for individuals with I/DD – but in New York, they receive just above minimum wage for their essential work. As a result, too many aspiring and current DSPs are opting for higher-paying jobs in competing sectors such as retail and food service.

The statewide vacancy rate for direct support positions in New York is currently upwards of 20%, with nearly 20,000 vacancies that the nonprofit sector has been unable to fill. This is unacceptable and unsustainable. 

If we go on like this, what happens to the 130,000 New Yorkers with I/DD, like Sean, who depend on DSPs for life-sustaining care? In short, they’re left behind.

As part of the 2024 Executive Budget, Governor Kathy Hochul included a statewide 2.5% COLA increase for the I/DD service sector. This is nowhere near enough to provide the necessary resources for nonprofit provider agencies. Inflation has caused operating costs for nonprofit providers to increase significantly, plus staff turnover is costing them an additional $100.5 million each year. Anything less than 8.5% could cause all prior progress made in stabilizing and helping the sector to be lost. Providers already have to reduce and shut down vital programs and services – and New York’s most vulnerable will suffer as a result. It is my child who will suffer.

An 8.5% COLA increase will also increase funding available to offer competitive wages. This is how quality staff can be recruited and, more importantly, retained. This past year, New York provided two wage increases for state-operated direct support staff. But, DSPs employed by nonprofit providers, like Sean’s, have received none. As a result, DSPs working at nonprofit agencies earn 70% of their state-operated counterparts’ salaries, although they do the same jobs for the same community. 

We must put an end to this and ensure all DSPs earn a fair, livable wage in exchange for their essential work. This isn’t just the right thing to do – it’s also a necessary step in ending the workforce crisis that has plagued our community for too long. 

Every New Yorker, including those living with disabilities, deserves the highest quality of life possible. By enacting an 8.5% cost-of-living adjustment (COLA), New Yorkers with I/DD can live a better life, and families like mine can breathe without the fear of not knowing if our loved ones will be able to get the support they need.

Karen Nagy, Rexford NY

Willowbrook scars live on

Ex-residents recall physical, emotional horrors as fight for disability rights continues

By Raga Justin, Albany Times Union, March 27, 2023

Jim Franco / Times Union

Bernard Carabello, who spent years as a child at the Willowbrook State School, attends the premiere of a documentary about the school on Thursday at the Hart Theater in Albany. The film details the abuse of disabled children and how it changed the course of disability rights.

Due to the length of the article, the link is pasted below so that you may read the entire article.