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

January 2023

Dear Governor Hochul,

Happy New Year!  We welcome in the New Year with renewed hope for people with Intellectual and Developmental Disabilities (I/DD) and their families.  Our independent family and self-advocacy organizations continue to oppose Managed Care support services for people with I/DD, and are against extending NYS legislative authorization to continue further exploration when it expires this year.  The effort to pursue Managed Care for I/DD support services has already been extended for more than a decade.  We believe that too much time and money has already been wasted.    Extending the authorization will only result in delaying any effort to implement other needed changes to the service system.  

In November of 2022, OPWDD awarded a $1.44 million consulting contract “to study and evaluate how the implementation of managed care would assist in improving Long Term Services and Supports (LTSS) for people with I/DD.”  Previous studies to determine the effects of Managed Care for I/DD services show no evidence of cost benefit, improved access to services or quality of care in states that have attempted to transition.

• A 2019 study funded by the Texas Legislature concluded: “While there are savings achieved on Long Term Services and Support claims, the amount of increased administrative expenditures outweighs savings from claims” (www.tinyurl.com/TX-IDD-Deloitte-Report )
• The Medicaid and Chip Payment and Access Commission, a non-partisan group of experts concluded in 2021: “While much research has been conducted on whether Managed Care delivery systems result in better outcomes than fee for service (FFS), there is no definitive conclusion as to whether managed care improves or worsens access to or quality of care for beneficiaries  www.macpac.gov/subtopic/managed-cares-effect-on-outcomes )

Even more disconcerting is a NYS funded study by Deloitte that estimates the cost for initial implementation of Managed Care for I/DD services would be $200 million and would result in a similar increase in annual administrative costs. 

The money spent on studying managed care over the last decade might have been put to better use serving the needs of people with I/DD and the workforce supporting them.  Given the urgency of stabilizing and improving the workforce, increasing residential options, improving access and diversity as laid out in OPWDD’s Strategic Plan, this continued distraction over managed care comes with the even greater cost of failing to take needed action to implement these goals.  Please let the authorization to explore Managed Care expire so that stakeholders can immediately get to work accelerating changes that have a meaningful and positive impact on people’s lives.

Respectfully submitted on behalf of Families and Self-Advocates Representing People with Intellectual and Developmental Disabilities across New York State

CC:         Dr. James V. McDonald, Acting Commissioner Department of Health

               Kerri Neifeld, Office for People With Developmental Disabilities

               Jihoon Kim, Deputy Secretary for Human Services and Mental Hygiene

               Kim Hill, Chief Disability Officer

Kathryn Garcia, Director of State Operations

               Sandra L. Beattie, Division of Budget

               Senate and Assembly Disability Committee Chairs

               Senate Majority Leader

               Assembly Speaker

Senate and Assembly Legislators

Letter from ENYDDA, NYC Fair, DDAWNY,LIANDD, SWAN, GROW, SOYAN, NYADD and New York Self Determination Coalition

Dear Governor Hochul,

We are independent consumer and family advocates across NYS, and we want you to know: We remain opposed to Managed Care Support Services for People with Intellectual and Developmental Disabilities (I/DD). Managed Care for I/DD services will not save money, will not provide better care and will not address issues of equity and access to services.

The OPWDD service system faces many challenges. Growing demand, problems with supply and quality, and an on-going work-force shortage have amplified those challenges. Following more than a decade of system transformation and exploration, we are hearing a repeated message from some, that Managed Care for I/DD is the solution. This narrative creates the impression that a transition to Managed Care for I/DD services is inevitable.

Managed Care promises to improve access by leveraging its provider networks.  It promises to improve quality by instituting value-based payments and risk sharing.  It promises to bring more innovation, and many, many more promises.  These promises sound too good to be true for a very simple reason – they are too good to be true.

We reject the unproven aspirations of managed care for I/DD support services.  Instead, we want to focus on making improvements that have a direct and positive impact on people’s lives, starting now. As the exploration of Managed Care for I/DD services continues, we will continue to challenge it. Managed Care for I/DD services is not here, is not inevitable, and is not a good idea. This is the first of a series, ‘Debunking the Myths of Managed Care’.  Please reach out to any one of us to discuss this issue. 

Thank you,

Respectfully submitted on behalf of;

Families and Self-Advocates Representing People with Intellectual and Developmental Disabilities across New York State

CC:         Dr. Mary Bassett, Department of Health

                Kerri Neifeld, Office for People With Developmental Disabilities

                Jihoon Kim, Deputy Secretary for Human Services and Mental Hygiene

                Kim Hill, Chief Disability Officer

                Robert Mujica, Division of Budget

                Senate and Assembly Disability Committee Chairs

                Senate Majority Leader

                Assembly Speaker

Senate and Assembly Legislators