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

April 8, 2022

From The ARC New York

The Governor and Legislature reached agreement on the New York State budget late last night, after extensive negotiations. This afternoon, the Senate and Assembly passed the Health and Mental Hygiene budget bill (A9007C/S8007C), which outlines the specific funding for our field, and realizes many of our initial advocacy priorities. 

The Enacted Budget includes a 5.4% cost-of-living adjustment (COLA), expanded eligibility of the Statewide Health Care Transformation Program (SHCFTP) to include community-based I/DD providers, and changes in language so our clinical staff can access the Nurses Across New York (NANY) loan repayment program. Yesterday, Governor Hochul mentioned an agreement to include $1.2 billion in bonuses for essential healthcare workers. This is the same amount appropriated in her Executive Budget, which included bonuses of up to $3,000 for Direct Support Professionals. We expect language outlining the direct care workforce retention bonuses will be released later today.

The final budget reflects and expands on the significant investment originally outlined in the Executive Budget. This is by far the largest investment New York state has made in the I/DD field in over a decade. Following the release of the one-house bills, we shifted our ask to support the Assembly proposal to forgo workforce bonuses in favor of an 11% COLA, which we saw as the most straightforward and effective way to allocate the funds committed in all budget proposals. Although we did not achieve the 11% COLA as proposed in the Assembly one-house bill, we were successful with our initial request – and in securing recognition of the crisis we are facing and the need for substantial investment in the I/DD field.

This success is due in no small part to the ardent advocacy from The Arc New York family. Since last summer, we have held rallies, garnered media attention, engaged with our legislators, and sent more than 17,000 letters calling for significant and sustained investment in essential supports and services for New Yorkers with I/DD. Our voices have finally been heard.

With this budget, the Hochul administration and the legislature have demonstrated a commitment to the voluntary provider sector, our direct care workforce, and the individuals and families we support. These investments are only the start of a much larger conversation about how to adequately fund equitable wages for our dedicated workforce, and ensure sustained investment the New York’s system supports and services. Our fight isn’t over, but the landscape has shifted, and we will continue to raise our voices together to achieve lasting support and solutions.

We will continue to advocate for a DSP Tax credit, which was not included in any of the proposed budget. The Education, Labor and Family Assistance (ELFA) Article VII budget bill and Aid to Localities, Capital Projects, and State Operations appropriation bills have yet to be introduced. We will provide necessary updates as bills are introduced and budget language is analyzed.

On behalf of The Arc New York, we thank each of you for your advocacy and your tireless contributions toward realizing our shared mission to provide New Yorkers with disabilities the ordinary and extraordinary opportunities of life!