She can start by supporting the Fair Pay for Home Care Act and hitting the brakes on changes to the Consumer-Directed Personal Assistance Program.

Opinion Editorial in Albany Times Union, December 19, 2024

By Elise Nakhnikian, Bobbie Sackman and Michael Solow

As older adults, we want home care to be there when we need it. And as health care programs face new uncertainties under the incoming Trump administration, Gov. Kathy Hochul needs to prioritize New Yorkers’ well-being in her upcoming budget.

In New York, Medicaid pays for about half a million home care workers who assist hundreds of thousands of older adults and younger people with disabilities, and that number is growing fast. Many thousands more New Yorkers are waiting for the other shoe to drop — for that phone call saying that Mom or Dad had a medical emergency. 

But Project 2025 outlines a plan to decimate Medicaid as we know it. And President-elect Donald Trump’s plans to cut taxes for the wealthy and slash the federal budget would balloon the federal deficit, making Medicaid even more vulnerable. 

New York already has the worst home care worker shortage in the nation, largely because wages are so low that it’s a struggle for those who care for the rest of us to care for their own families. More than 40% of New York’s home care workers already live in or near poverty. What’s more, privatization in home care has led to massive profiteering, leading to worse outcomes for consumers.

So far, Hochul’s support of home care has been inconsistent at best. In 2023, she signed off on a $3-an-hour raise for home care workers, an important first step but far short of the bipartisan Fair Pay for Home Care Act, which would have created a living wage set at 150% of minimum wage. 

Unfortunately, she has since backtracked. First, Hochul tried to roll back the $3 raise. She rebuffed an attempt to get rid of the private insurance companies that serve as costly middlemen in our Medicaid home care system, siphoning out an estimated $3 billion in profit every year. And her changes to the Consumer-Directed Personal Assistance Program, the trusted program through which more than half of our state’s Medicaid-funded home care recipients get assistance, could result in tens of thousands of older and disabled New Yorkers losing their home care.

As the governor assembles her next budget, Hochul has a chance to rethink her priorities and provide New Yorkers with the home care they need.

For a start, she could support Fair Pay for Home Care. A CUNY analysis showed that paying home care workers a living wage would not just help those who rely on and provide home care; it would also make our state’s economy stronger. Better paid workers would spend more at local stores, pay more taxes and stop needing SNAP and other public assistance. Hundreds of thousands of their children would be lifted out of poverty. 

The governor could support the Home Care Savings and Reinvestment Act, which would get rid of middleman insurance companies, freeing up billions for care and wages rather than executive salaries and stock buybacks. Finally, Hochul could back legislation to rescind the move to a single private company to run the Consumer-Directed Personal Assistance Program.

This isn’t just humane policy and good economics. It’s smart politics. Most New Yorkers will give or receive home care at some point. Home care also allows millions of care recipients’ friends and relatives to do their own work without taking budget-crippling time off. 

In this time of political uncertainty, we do not need additional threats of disruption from our state government.  We need a leader who will have our backs. We urge Hochul to be that leader.

Elise Nakhnikian, Bobbie Sackman and Michael Solow are members of the New York Caring Majority.

Dear Friends and Colleagues,

On behalf of myself and everyone at OPWDD, I am pleased to share with you the agency’s 2024 Annual Report, an update to the overall 2023-2027 Strategic Plan.

Updates included in the Annual Report reflect implementation of our shared goals to stabilize the direct support workforce, increase employment opportunities, improve transparency through data, and broaden participation of diverse voices in our conversations about the future.

We are excited to add more concrete outcome metrics, data, and infographics to this year’s report. You will also find information on our Short-Term Housing Strategy, intended to offer solutions to some of the most frequently heard concerns regarding the sustainability of Certified Residential Services. In support of the Short-Term Housing Strategy, OPWDD will issue updated Certified Residential Opportunities guidance in the form of an Administrative Memorandum, and a Request for Services seeking contractors for the delivery of home enabling supports, later this week.   

The accomplishments outlined within the report were achieved in partnership with you.  I am especially grateful to the advocates, families, and providers who participated in our Strategic Planning forums to offer feedback on what the system is doing well, where there is room for growth, and the areas of greatest importance. This collaboration and your partnership help move the developmental disabilities service system forward.

I look forward to our continued work together.

Sincerely,

Willow Baer
Acting Commissioner

The Office for People With Developmental Disabilities is excited to announce the start of the National Core Indicators (NCI) In-Person Survey (IPS) for 2024-2025. This survey is a voluntary effort by our agency to measure and track our performance by asking adults aged 18+ who are receiving services to share information about their quality of life and how they feel about the services they receive.

This year we are surveying over 1,750 people across New York State. The NCI In-Person Survey is optional and will not impact the current services or supports a person receives from OPWDD.

By early January 2025, letters will be mailed to eligible participants letting them know they may be asked to participate in the survey. These participants include people with all types of developmental disabilities who live in different residential settings.

Vital Research is the contracted vendor who is doing interviews on behalf of OPWDD. Their interview team will begin contacting people in January 2025 to schedule a HIPAA-compliant Zoom interview.

For More Information, please:

• Visit the NCI IPS Frequently Asked Questions on the project website: https://www.vitalresearch.com/newyork/nci/index.html
  
• Visit the National Core Indicators (NCI) website: https://www.nationalcoreindicators.org/
  
• Contact OPWDD’s NCI State Coordinator, Olivia Popiel at: NCIAdultInPerson@opwdd.ny.gov

Dear Friends and Colleagues:

I am excited to announce that the new Ombuds program, headed by Community Service Society of New York, is now open and ready to accept the calls of people with developmental disabilities and their family members in need of assistance resolving concerns, navigating barriers to services and making the right connections. 

The new Ombuds program, which will operate independently of the Office for People With Developmental Disabilities (OPWDD), was developed to provide education and help people better understand their rights, to provide advocacy and support for people navigating the OPWDD service delivery system, and to assist people with developmental disabilities and their families to resolve concerns related to service access and quality. 

People with developmental disabilities and their families should continue to work with their care managers and their Care Coordination Organizations when it comes to service access and coordination. The Ombuds is not meant to replace the current mechanisms for accessing services but is meant to provide an avenue for resolving issues and complaints when existing mechanisms have not produced a resolution.

Community Service Society has a history of working with people with developmental disabilities, has experience in implementing statewide ombudsman programs and is ready to hit the ground running.   

To contact the new Ombuds program for assistance, please call 1-800-762-9290 or email idd@cssny.org.

For more information about the program, visit https://www.cssny.org/programs/entry/iddo.

Best Regards,

Willow Baer
Acting Commissioner

Read Governor Hochul’s Press Release: Governor Hochul Announces New Ombuds Program to Help New Yorkers With Developmental Disabilities And Their Families

A state comptroller’s audit found many districts have waiting lists for preschool special education programs that students are legally entitled to receive
Albany Times Union

By Capitol Bureau

Dec 5, 2024

ALBANY — A state comptroller’s audit found that preschool students across New York are not always receiving necessary special education services or getting that help late.

The audit released Thursday also revealed the State Education Department has been hindered in its ability to oversee those programs because the agency was not aware of how many students were enrolled in preschool special education programs, what services they are provided or the number of school districts that have waiting lists.

“Providing timely, quality early education services to preschool children with special needs can make a world of difference in their development, and delays can have long term consequences for their academic futures,” state Comptroller Thomas DiNapoli said in a statement. “Too many children are not getting the services and therapies they are entitled to within required timeframes, and some are not getting the services at all.”

DiNapoli said the Education Department and school districts need to do a better job providing services for those students and that the state agency had agreed with the findings and has initiated steps to improve those services for students.

According to the comptroller’s office, children referred for special education services undergo a parent-approved evaluation and then have an education plan developed for their individual needs. Those services are supposed to begin within 60 days of parental consent and the students are entitled to them under the federal Individuals with Disabilities Education Act.

But the audit revealed many children are not getting the specialized services or others are not receiving them within that 60-day period. More than 80 percent of the 550 school districts that responded to an audit survey said they have waiting lists for those services. New York City schools were not included. Auditors visited an additional 40 school districts and found 21 of those collectively had waiting lists of more than 300 students.

The comptroller’s office said the Education Department acknowledged that the waiting lists violate federal requirements that students with disabilities receive the services to which they are entitled. The Education Department does not have data to pinpoint the programming challenges, including provider shortages, that could provide more information on the difficulties districts are facing in providing the services.

The Education Department apparently does not monitor how districts determine who goes on a waiting list and whether the systems are fair, which the comptroller’s office said is contributing to the breakdown that prevents the state from knowing how many students are not getting all or some services.

The audit includes seven recommendations, including having the Education Department develop a strategy to address the shortage of preschool special education services and to work with district to identify ways to improve the system. It also recommends the state improve monitoring of districts and create data controls to ensure the records are complete and accurate.

Commentary: How will the Trump administration advance disability rights?

One in four Americans lives with a disability, and they need greater services and supports.

By Joseph Pancari

Dec 3, 2024

As the nation prepares for a demonstrable shift in leadership, people with disabilities are asking: What about us?kip Ad

One in four Americans is living with a disability. But we have heard little about the ways the new administration would advance disability rights and access during Donald Trump’s second time behind the Resolute Desk.

To do so would be relatively straightforward, as there is much to build on already: America is a leader in disability services and solutions, and we recently marked the 34th anniversary of the landmark passage of the Americans with Disability Act. Under the law, every public space must have accommodations for wheelchairs, and people with disabilities are afforded equal status and provided specific protections around hiring, housing and transportation.

Another sign of progress occurred in March, when the Senate unanimously passed legislation that qualifies the profession charged with providing daily assistance, direct support professionals, as its own standard occupational classification, making this contingent unique amongst other health care workers. Now it is up to the U.S. House of Representatives to pass the parallel Direct Support Professionals Act (H.R. 2941).

The wish of the provider community for the next four years is a broadened panorama of services and supports. The shared goal is to provide as many opportunities as possible for those with disabilities to achieve fulfilling lives. At Constructive Partnerships Unlimited, we see daily the challenges experienced by people with intellectual and developmental disabilities and the heroic work of our dedicated team who empower their success. We also know the frustrations when vacancies increase, both in terms of open beds and available positions that go unfilled.

Some initial steps the new administration could take may include streamlining the confusing array of agencies and barriers that can make it difficult to access quality services both federally and locally. Another priority would be for a national “Traveling with Dignity” Act, like the one passed in New York State, which mandates height-adjustable adult changing tables in government buildings, at large public venues, and in rest stops accessed by the interstate highway system. The federal government should also subsidize more research into medical interventions and technological tools that improve the lives of people with intellectual and developmental disabilities. Finally, adding funds to help agencies meet state and national climate goals will modernize the industry and make it a world leader in sustainable disability services.

Further, America must more robustly commit to its aging population now and in the immediate future, especially as it relates to persons with disabilities. The top concern for anyone with a child or adult child with a disability is, “What will happen to them when I am gone?” Two strategies worth serious consideration are new investments in flexible residential supports for people languishing in nursing homes or emergency rooms, and development of residential solutions that support both people with disabilities and their aging caregivers.

This is all to say that America has work to do. To turn away from the intellectual and developmental disabilities field is to ignore the promise in every individual and to undercut the inclusive values inherent in our founding documents and vision for a better future. I urge President-elect Trump and all lawmakers to uphold this idea and address this vital societal need.

Joseph Pancari is the CEO of Constructive Partnerships Unlimited.

Dear Friends and Colleagues:

OPWDD joins our partners all across New York State in recognizing International Day of Persons with Disabilities today. This year’s theme is particularly fitting to the work we’ve been doing with self-advocates here at OPWDD: “Amplifying the leadership of persons with disabilities for an inclusive and sustainable future.”

I am proud to say that one of my first actions as Acting Commissioner of OPWDD was to welcome six Peer Specialists to our team:

• Christopher Bristler
• BJ Stasio
• Chester Finn
• Marilyn Stata
• Joshua Mirksy
• Elphie Kuzande

Acting Commissioner Willow Baer with Self-Advocate and OPWDD Peer Specialist, B.J. Stasio at the Self-Advocacy Association of New York State’s annual conference.

Peer Specialists are people with developmental disabilities who work for OPWDD at different locations across the state to advocate alongside and on behalf of people who receive services, educate people about their civil rights, and ensure that decision-makers consider the perspectives of people with developmental disabilities by participating in staff training, providing input on policies, and procedures, and working with OWPDD leadership. We are grateful to have their input and to be able to draw upon their experiences to benefit people who receive services.

We also recognize New York’s Chief Disability Officer, Kim Hill-Ridley, who was recently appointed to the National Council on Disabilities. Kim has helped amplify the voices of our state’s self-advocates for a more inclusive New York. She has championed the addition of Accessibility to the extensive Diversity, Equity, and Inclusion (DEI) work being done within state agencies and offices and has helped Governor Hochul launch the DREAM (Disability Rights & Employment Awareness Month) Symposium, which celebrates the value that disabled New Yorkers bring to the workforce and assists in matching prospective qualified candidates with employers. We are grateful to have her voice – and the voice of the New York disability community – advising the President and Congress on disability rights, needs and advocacy.

I look forward to continuing to work with all of you in amplifying the leadership of people with disabilities in our system and in the state.

Sincerely,

Willow Baer
Acting Commissioner

Dear Friends and Colleagues:

As part of my commitment to enhancing the agency’s transparency and being more responsive to stakeholder feedback, I am excited to share new, interactive, Medicaid data dashboards as part of this year’s annual release of information on services. For the first time, the Office for People With Developmental Disabilities (OPWDD) has added Medicaid expenditure data on OPWDD services and supports that can be broken out by region, type of service, type of self-direction being used, if applicable, and service provider. Different “data dashboards” provide information on total expenditures, average expenditures, and the use of services and can be sorted in a number of ways, depending on user interest. For example, you could look at information about services received by people in a particular region of the state or by people of a particular age group.

In addition to these interactive dashboards, we have redesigned our data webpages to make it easier to access the information and have released a new set of By the Numbers infographics that provide concise visual summaries of information about our services and supports.

These updates will help OPWDD to make information about our service system readily available and easy to understand for everyone. We remain committed to continually improving our ability to collect, analyze and share data about our service programs and sharing data that informs our policies and our ongoing work to improve the service system.

To view the new data resources, visit www.opwdd.ny.gov/data.

Sincerely,

Willow Baer
Acting Commissioner