Dear Friends and Colleagues,

I am incredibly honored and humbled to have been nominated by Governor Hochul, and confirmed earlier today by the New York State Senate, as the Commissioner of the Office for People With Developmental Disabilities.

For the last year I have traveled across the state visiting programs, clinics, and homes, and meeting with self-advocates, families, direct support staff, agency executives and community partners.  I have heard about what is working well in our system and where there may be opportunities for improvement.  The insight I gather from hearing from all of you helps to inform agency policy and the evolution of our work at OPWDD. 

It is in response to your feedback that I launched a new Office of Advocacy this year, which employs several people with lived expertise in having a developmental disability. This team helps inform the work of the agency, by sharing their daily experiences in navigating the service system, as we evaluate policy development and implementation.  The Office also supports people with developmental disabilities and their families in advocacy throughout the state.

Additionally, understanding the struggle of our non-profit sector led to an historic $850M investment in our certified residential and site-based day service providers, making funding available for increased wages for front line staff in order to enhance sustainability and access to these vital services.  This investment complements four back-to-back cost of living or inflationary increases Governor Hochul has invested in the OPWDD non-profit sector over the last four budget cycles.   

Feedback from advocates about how hard it was to access quality health or dental care led to the rebuilding of the OPWDD Dental Task Force, a renewed focus on people with developmental disabilities who are aging, and this year’s $25 million investment to create Regional Disability Health Clinics with increased capacity to serve people with developmental disabilities. A $75 million investment in OPWDD’s Institute for Basic Research in this year’s enacted budget will also modernize the facility and add a genomics lab to provide nation-leading research into the role that genetics plays in people’s diagnoses.

Finally, I am excited to work with some of the field’s staunchest advocates to create a Center for Learning on the Willowbrook State School Campus to honor the people who lived there and their families who exposed the atrocities that occurred more than 50 years ago.

As your Commissioner, I will continue to honor the voices of self-advocates, family members, and marginalized communities in OPWDD’s work. I am grateful to live and serve in New York State and I am committed to improving the experience that people with disabilities, their families, and our providers have with our system.

While the current federal climate is uncertain, we will be advancing strategies that impact people’s lives for the better by overhauling our residential programming to increase efficiency and choice; conducting regular listening sessions for families; building upon our outreach efforts to marginalized communities; creating a Commissioner’s Taskforce on Aging to recommend strategies to assist aging New Yorkers with developmental disabilities; cultivating partnerships to encourage more employment of people with developmental disabilities and continuing our statewide campaign to elevate the role of direct support professionals to encourage hiring and retention.

I am so grateful for the trust of Governor Hochul and the faith of the New York State Senate to serve in this important role and I look forward to continuing to work together for the people we love.

Sincerely,

Willow Baer
Commissioner

Dear Friends and Colleagues,

I am happy to share that the 800-page Care Coordination Program Evaluation report and Executive Summary is now available for review and can be found on OPWDD’s website, along with a plain language version, which will be translated into multiple languages. OPWDD chose the American Institute for Research Inc. (AIR) in April 2023 to evaluate the effectiveness of care management services delivered through OPWDD’s seven Care Coordination Organizations (CCOs). This review and AIR’s recommendations will help OPWDD and the CCOs understand how we can improve the quality and effectiveness of care coordination and the outcomes for people who receive care management services.

The review continues and builds upon the partnership between OPWDD and the CCOs to improve quality and effectiveness through a variety of collaborative activities already underway. The evaluation examined several important aspects of the CCO program such as its impact on overall health and wellness of people being served, how well the program is meeting the needs of people from diverse and/or complex backgrounds, how the program interacts with service systems beyond the developmental disabilities system and the effectiveness of its health information technology. It identifies systemic challenges that are impacting the program’s effectiveness and makes recommendations for improvements. 

The in-depth review includes input from self-advocates, parents and caregivers, developmental disability providers and non-developmental disability providers, as well as from the CCOs and Care Managers themselves. In the final report, AIR identifies 67 recommendations for consideration by both CCOs and OPWDD. In fact, some of the recommendations provided by AIR are already underway between OPWDD and the CCOs.

As we review these recommendations, OPWDD continues to work with our CCO partners to deliver the most person-centered support to drive improved health and quality of life outcomes for New Yorkers with developmental disabilities.

You can read the report and its recommendations here Care Management | Office for People With Developmental Disabilities. Thank you to everyone who shared your experience as part of this review process.  

Sincerely,

Willow Baer
Acting Commissioner

Dear Friends and Colleagues,

As OPWDD continues to focus on providing a continuum of support throughout a person’s lifespan, we recognize that the needs of an aging population with developmental disabilities can be complex. Supporting ways for people to age with dignity in their communities is critical and we are committed to supporting this ongoing quality of life.

To build upon New York State’s recent work on the Master Plan for Aging, I am hereby establishing a Commissioner’s Taskforce on Aging to develop actionable recommendations to address the increasing needs associated with aging for people with developmental disabilities in New York State.

The taskforce will be a time-limited subcommittee of the Developmental Disabilities Advisory Council (DDAC) and will be co-led by a member of the DDAC and my office.  Membership will include subject matter experts in health, aging, housing, and developmental disabilities, and will include self-advocates, family members, developmental disabilities providers, and Care Coordination Organizations, as selected by the Taskforce chairs. Questions may be sent to DDAC@opwdd.ny.gov.

I look forward to working with this group to identify best practices that are responsive to the needs of aging New Yorkers with developmental disabilities and of those who support them.

Sincerely,

Willow Baer
Acting Commissioner

The Office for People With Developmental Disabilities (OPWDD), in collaboration with the Department of Health, is pleased to provide updated guidance for the management of communicable respiratory viral illnesses in OPWDD certified settings. 

Today’s two guidance documents replace the most recent Management of Communicable Respiratory Viral Infections, issued in February of 2024, which applied to all OPWDD settings.  As COVID-19 has become increasingly manageable, we have seen the CDC adjust their guidance surrounding not just COVID-19 but all respiratory viral illnesses, such as the flu and RSV. We have further separated the guidance into (a) recommendations for healthcare settings (ICFs and specialty hospitals) and (b) recommendations for community-based settings, consistent with the CDC. For community-based settings, the mere exposure to a communicable respiratory virus will no longer necessitate the quarantine of a program participant, absent factors outlined and depending upon a program’s specific policies.

These new guidance documents are being implemented effective immediately and are available here:

Respiratory Viral Transmission Infection Control Guidance for COVID-19, Influenza and Respiratory Syncytial Virus in Intermediate Care Facilities and Specialty Hospitals

Respiratory Viral Transmission Infection Control Guidance for COVID-19, Influenza and Respiratory Syncytial Virus in Community-Based Settings and Programs

View the OPWDD Regulations and Guidance Page

he state has agreed to delay the deadline for its troubled home care overhaul until June, aiming to quell fears that caregivers wouldn’t receive paychecks on time under a new payment system.

Attorneys for the state and home care users proposed an agreement on Wednesday night that delays the state’s deadline to overhaul the consumer-directed personal assistance program, also known as CDPAP, until June 6. The state aimed to transition roughly 280,000 home care users and their caregivers to a new payment system by April 1, but slow enrollment and technical challenges that threatened to disrupt access to care have forced state officials to concede to a later date. 

The proposed preliminary injunction, which must be reviewed by a federal judge, is the latest hurdle for the state’s contentious transition, which was spearheaded by Gov. Kathy Hochul last year to cut Medicaid costs. The Hochul administration contracted with a single payroll processing company, Georgia-based Public Partnerships LLC, or PPL, to pay caregivers through the program, replacing the roughly 600 third-party businesses that previously held that job. Since January, health officials have scrambled to enroll all home care users and workers with the new company, but efforts have stalled amid industry pushback, staffing challenges and court orders that have postponed the state’s deadline to complete the task.

Under the new agreement, home care users will have until May 15 to enroll in the new system and workers will have until June 6, according to the proposal. Consumers who themselves have not fully moved over to the new system or whose caregivers have had trouble signing up can use their old company to process worker payments in the meantime, but must continue registering with PPL by the new deadline, the proposed order says. PPL will offer an expedited registration process for those who cannot be paid through the old system. 

“This proposed agreement supports the state’s ongoing CDPAP transition and ensures our reforms will proceed in full,” said Sam Spokony, a spokesman for the governor’s office, adding that the proposal will have no impact on the consumers and workers who have already completed their registration with PPL.

Spokony criticized misinformation about the transition. “The $10 million dark money campaign by shady business groups has failed to stop New York state’s much-needed CDPAP reforms, which will protect CDPAP for people who need it and put an end to runaway bureaucratic spending in this taxpayer-funded program,” he said.

As the state prepared to move all home care users and workers to PPL’s payment platform by April 1, many raised concerns that the company was ill-prepared to enroll people and process payments by the deadline. The state extended its registration period for 30 days and offered to pay workers retroactively for services rendered, but the move led to confusion and fears that people would lose services.

Days before the transition was supposed to come to a close, the New York Legal Assistance Group filed a lawsuit on behalf of home care consumers and businesses alleging major technical challenges that barred people from signing up with the new system and potentially disrupted care. The lawsuit led Judge Frederic Block, who presides over a federal court in Brooklyn, to issue a temporary restraining order last week, allowing the third-party businesses that used to pay personal assistants to continue serving home care users who had yet to enroll in the new system. The completion of the overhaul remained in limbo for days as attorneys for the state and home care users negotiated a deal to preserve access to care. Block is set to decide on the proposed agreement to delay the deadline in the coming days.

Advocates for home care users and the industry say the agreed-upon delay points to failures in the state’s transition plan.

“The Department of Health is fully admitting that PPL is not up to the job and that thousands of consumers are facing disruption of care,” said Bryan O’Malley, executive director of the lobbying group Alliance to Protect Home Care. “Considering PPL has screwed this up since the beginning, what makes anyone believe this will be any different with another two months?”

April 10, 2025: This story has been updated to say it is not clear when the federal judge will decide on the proposed preliminary injunction. 

—

by Michelle Diament | March 31, 2025

A government agency that funds services and supports for people with disabilities living in the community will be broken up as part of a massive reorganization of the U.S. Department of Health and Human Services.

The agency’s Administration for Community Living, which oversees programs helping people with disabilities access all range of services in their communities and advocates for the needs of people with disabilities, older adults, families and caregivers across the federal government, will be shuttered.

“The critical programs within the Administration for Community Living (ACL) that support older adults and people of all ages with disabilities will be split across the Administration for Children and Families (ACF), Assistant Secretary for Planning and Evaluation (ASPE), and Centers for Medicare and Medicaid Services (CMS),” HHS said.

The changes announced late last week are part of what federal officials described as a “dramatic restructuring” of the health agency aimed at improving efficiency. Through the effort, the department will lay off about 10,000 employees. Combined with early retirements and buyouts since the Trump administration took over, HHS said it expects to downsize its workforce from 82,000 to 62,000 full-time employees.

In addition, the current 28 HHS divisions will be consolidated down to 15 and regional offices will be trimmed from 10 to five, officials said.

“We’re going to eliminate an entire alphabet soup of departments and agencies while preserving their core functions,” Secretary of Health and Human Services Robert F. Kennedy Jr. said. “We’re going to do more with less.”

The Administration for Community Living was established in 2012 in an effort to bring together aging and disability programs across HHS in recognition of the fact that most people in these populations live in the community and want to remain there.

The agency funds and works with over 2,500 community organizations nationwide including centers for independent living, protection and advocacy systems, developmental disabilities councils and much more, according to Alison Barkoff, a professor at George Washington University who led the Administration for Community Living under the Biden administration.

People “might not have heard of the Administration for Community Living, but they’ve probably benefited from ACL’s programs,” she said, citing examples ranging from respite care services to help accessing special education or Medicaid benefits, employment assistance for transition-age youth and in-home supports and services. “I don’t see how you can have that level of cuts in staff without seeing an impact on programs and services.”

More than that, Barkoff said that the existence of the Administration for Community Living ensured that federal agencies considered the needs of people with disabilities in decision-making.

“ACL had a seat at the table with the secretary, with leaders of programs. If ACL is broken up, they will not have that seat at the table. The disability voice is being lost,” Barkoff said.

Representatives from HHS did not respond to questions about how the Administration for Community Living’s responsibilities will be divided or how many current staff will be let go.

“This consolidation allows the department to better meet the current health needs of vulnerable populations across the country. This does not impact the important work of these critical programs as it will continue elsewhere within HHS,” an HHS official told Disability Scoop.

Advocates from several disability organizations said they were shocked by the move to dismantle the Administration for Community Living, particularly given that it was established as a centralized hub in order to promote efficiency and prevent duplication.

“For over a decade, the Administration for Community Living has provided critical oversight and funding for programs that protect against abuse, promote community living and support family caregivers,” said Julie Ward, senior executive officer of public policy at The Arc of the United States. “Without a dedicated agency to champion these programs, millions risk losing the oversight, funding and technical assistance for programs they rely on to live independently. We urge the administration to halt this reorganization and engage directly with the disability community before making changes that could jeopardize their rights and well-being.”–

Hi Everyone,

BREAKING: We’ve won a major victory! A federal judge in Brooklyn issued a temporary restraining order (TRO) on the CDPAP transition tonight, halting the transition for at least three days.

This ruling couldn’t have happened if we hadn’t put our bodies on the line and made clear just how much devastation this ruling would cause. Thanks to us, it has become impossible for anyone to ignore the glaring flaws in the PPL plan.

We’re still reviewing the ruling and will have additional information to share tomorrow. But this is undeniably good news and a direct result of our collective action.

The fight isn’t over. The court will hold a hearing Friday to decide whether to extend this delay.

Here’s how to keep the pressure on:

• Call Your Legislators: Call Gov. Hochul, Speaker Heastie, and Senator Andrea Stewart-Cousins to demand they permanently STOP the CDPAP transition. (Here’s our call-in toolkit).
• Share PPL Horror Stories: Share our Twitter thread documenting consumers’ and workers’ failed enrollment attempts.
• Join Our Water Cooler and Learn More: Connect Tuesday, Wednesday and Thursday at 7:00 pm. (Registration link).Tomorrow, Michael Kinnucan at the Fiscal Policy Institute will discuss the TRO, along with the PPL Health Plan and its impact on PAs.

This TRO shows our voices are being heard, but we need to keep pushing. We have many friends in our fight and the list is growing – just this week, the AARP, NY NAACP, National Domestic Workers Alliance Medicaid Matters, Legal Aid Society, National Center for Law and Economic Justice, National Employment Law Project, and more have called for a delay.

But for now, take a moment to breathe and celebrate this victory. There’s still work ahead, but today proved that together, we can win this fight.

Stay tuned for more updates,