By Inclusive Alliance


Dear OPWDD Planning Unit,

On behalf of the Inclusive Alliance, I, Nicole Hall, Manager of Network Development for Inclusive Alliance, am pleased to submit the following comments regarding the 2023-2027 draft strategic plan. We are a network of community-based providers that formed an independent practice association (IPA) in 2017, now comprising nearly 30 diverse healthcare & non-billing human service providers serving Central New York counties in OPWDD region 2. Our alliance of providers began with several I/DD providers in our region and has grown over time to include organizations serving individuals with mental health needs, substance use challenges, and unmet social care needs. These organizations not only have significant service provision history, but many leaders and staff within these organizations also have children of their own with development disabilities that would be impacted the changes outlined in this draft strategic plan. This comment has been developed with, and is submitted on behalf of, this network of providers.

Inclusive Alliance commends OPWDD for taking feedback on the draft strategic plan from individuals, families, and providers within the I/DD service system. We are also pleased to see the collection and use of data in driving systems change is a focus for OPWDD, as Inclusive Alliance has made substantial investments in data sharing infrastructure for our network. Individual voice and choice must be heard to ensure effective and appropriate services are available to the community, and we know that individuals, families, and providers have incredible insight into how to best support the service delivery system as a whole. We want to thank Commissioner Neifeld for taking the time to meet with families, providers, and relevant stakeholders in the process of developing this strategic plan and commend her for producing the first OPWDD strategic plan in the past decade. This example of bold leadership is greatly needed at this critical time.


General Comments

The primary goals outlined within this strategic plan are an excellent starting point to improving the service delivery system for individuals with developmental disabilities. However, it is the plan for action for achieving these goals that is most urgently needed. In recent years, the COVID-19 pandemic has exacerbated long-standing problems within the service system, and families are struggling now more than ever as they try to access services within an overwhelmed system. The draft strategic plan does not fully articulate meaningful action steps to address the concerns that have been outlined by stakeholders over the past several years. Individuals and families across our state are in crisis, and this will continue to worsen the longer we wait to implement real change in our service systems.

Much of the language used within the draft strategic plan alludes to evaluating or examining current challenges and system design flaws. These commitments fall short of the tangible help from OPWDD that the community has needed for years. Research, evaluation, and education are ongoing processes and a critical component of ensuring that we are delivering the best services, but they must accompany real action as well. Even where OPWDD acknowledges they have already invested significant time in examining how to better serve culturally and ethnically diverse communities, the primary conclusion drawn after 5 years of research is that there is a need for further study. If OPWDD wishes to maintain its commitment to transparency and to the community, there must be a clear near-term plan of action in association with the longer-term strategic planning that has been outlined here. The few action steps outlined within this draft plan are not consistent with the comments received from the few stakeholders included in the initial development process of this draft strategic plan and do little to address the underlying challenges and root causes of these problems.


Managed Care Transition

Of particular note to our provider network is the absence of thoughtful strategy about well-known impacts of the managed care environment to both providers of service and individuals in the community. While the developmental disability population still awaits their transition into the managed care environment, we can see clear lessons learned from other states and populations within New York who have already made this transition. Within this strategic plan there is no mention of supporting existing providers who have been diligently preparing for this transition by forming collaborative networks with the capacity to negotiate contracts with Managed Care Organizations. Independent practice associations, such as the Inclusive Alliance, have formed with the goals in mind of supporting high quality and cost-effective services to our community members through extensive collaboration and coordination.

Regardless of the policy path that OPWDD pursues to achieve the transition to managed care, strong, independent provider networks with the ability to negotiate collectively with payors will be essential to ensuring fair reimbursement rates for providers. Even specialized I/DD plans that are provider-led will necessarily seek to achieve cost savings. Captive provider networks organized by those plans would lack leverage to negotiate for adequate reimbursement rates. The ability of networks to negotiate on behalf of their members and the value they provide to their community is critical to support ongoing capacity building and quality improvement within the Managed Care environment. Without clear support of these collaborative efforts by OPWDD, community providers will continue to struggle to meet these goals and the individuals we are meant to support will be negatively impacted.



We are excited to see that workforce challenges are acknowledged within this plan, though again struggle with the lack of detail provided. We are sure that existing workforce will be appreciative of the one-time payments outlined in the plan, however, increasing wages for staff long-term is critical to resolving workforce shortages moving forward. Without better financial support for not only front-line staff, but all positions that directly support service delivery such as fiscal intermediaries and brokers, providers will not be able to remain competitive in the employment market, and we will not see significant improvement in our existing workforce challenges. There has already been significant state investment in Care Coordination Organizations (CCOs), which have rightly used their resources to offer competitive compensation to their staff including front-line care managers. Similarly, state operated program staff have also received significant pay increases allowing these positions to remain competitive within the labor market. Since community-based I/DD providers have not received such investment, the unintended consequence of this disparity in investment is exacerbation of recruitment and retention challenges among providers attempting to compete with CCOs and state workforce for candidates. The solution to this issue is not less investment in CCOs or state-employees, but rather greater investment in community-based providers.

We hope that the partnerships outlined within this plan will support the development of a greater staffing pool and want to highlight the necessity of this in particular for rural counties who must not only overcome recruitment challenges related to salary, but also a much smaller staffing candidate pool to recruit from as well.

We must also reinforce the importance of ongoing training opportunities for new staff. As providers are currently doing their best to manage high rates of turnover, and recruitment of staff who may be new to this service system, we must ensure that adequate training is available for staff across the state to obtain necessary certification for their positions, and to ensure that all staff have a deep understanding of the incredibly important, but often complex, work that is necessary to appropriately support the I/DD population.


Complex Needs / Acuity Based Rates

It is concerning that reimbursement rate revisions included within this draft reference the use of acuity determinations, despite the lack of accuracy and success in other service systems using this method. Without clear information about how acuity will be determined, this may jeopardize the financial stability of programs reliant on acuity-based reimbursements. As we have clearly seen in other service models, acuity measurements may not consistently or accurately reflect the level of support provided to those individuals. High levels of support can lead to success for individuals in the community and a reduced utilization of high intensity services leading to lower acuity-based reimbursement. Reducing reimbursements for individuals who require high levels of support jeopardizes their providers’ ability to maintain appropriate support levels, and the long-term health and wellness of the individuals we support. This concern was similarly highlighted in the feedback already gathered from stakeholders regarding budgets individuals receive for self-direction services.

Implementing such a significant change to reimbursement structures should not occur until after I/DD providers complete the transition to a managed care environment. Providers need additional time, information, and resources to develop the necessary data infrastructure to support any reimbursement methodology shifts and minimize any negative financial impacts, at a time when resources are already taxed. Further, providers need complete transparency in the determination of acuity levels, and opportunity to be involved in the development of metrics utilized for this reimbursement methodology.


Programmatic Changes

Many important programmatic and administrative changes have been proposed within this draft plan. Unfortunately, the language included around these changes is often vague and not reflective of community need as demonstrated in the stakeholder comments, nor is it transparent about the challenges that exist.

Self-Direction services were specifically called out by many stakeholder comments in the preparation of this plan and included many thoughtful suggestions. While the draft strategic plan does call for further evaluation of the administrative burden associated with these services, there is a missed opportunity to couple this with action to offer immediate relief to providers. Implementing more training opportunities both to support additional broker certification, and to care managers to support individuals in utilization of self-directed services are examples of action steps that could be implemented without additional research delays. It is also critically important that budget approvals by OPWDD become more efficient to alleviate the very long delays families face when utilizing this service.

Children’s services were appropriately identified in the strategic plan as an area requiring attention, revision, and support. More youth are being diagnosed with I/DD every year, but OPWDD does not currently offer adequate supports for families struggling to meet the needs of their children. Instead, these responsibilities have been delegated to different services systems that are not equipped to meet the comprehensive needs of these youth. Child and Family Treatment and Support Services (CFTSS) is a promising model for youth with behavioral health diagnoses, but outside of the widespread capacity shortfalls in the CFTSS provider network, it was not designed for, nor capable of, meeting the needs of our developmentally disabled youth.

Further, there is very limited expertise for youth, or adults, who are dually diagnosed with both behavioral health and developmental disability needs within the current service system. OPWDD partnered with OMH to deliver collaborative treatment options, such as the Residential Treatment Facility at Our Lady Victory, producing only 12 slots to serve the entire state, and youth can remain at this facility for several months at a time. Additionally, only youth who have already been determined eligible for the OPWDD Waiver and have specific educational classifications along with a behavioral health diagnosis can be considered. This leaves very few youth eligible for this program, despite many more who could benefit from it but cannot receive appropriate diagnoses and classifications due to lack of appropriate evaluation centers, even fewer evaluation centers that accept Medicaid, and the lengthy eligibility process for the OPWDD waiver services. Parents across the Central New York area speak out often about their challenges in getting their children evaluated and appropriately diagnosed so that they can start to receive supports and share that it is not uncommon to wait a minimum of 2 years before they can access an appropriate evaluator. In some cases, families who can travel hours to other areas of the state to access evaluations faster, but this is not possible for every family. It is disappointing that these challenges and disparities are not addressed well within this plan.

Individuals of all ages, and families need better direct supports. We have a distinct lack of capacity and options for individuals struggling with cooccurring I/DD and behavioral health diagnoses. The community needs stronger partnership between OMH and OPWDD, beyond just integrating a licensure process. We need OPWDD, in partnership with OMH, to lead the way in procuring or developing effective, evidence-based, treatment models for individuals and families to ensure that there is capacity and expertise within the outpatient and community-based service systems to improve outcomes for everyone we support. This partnership could extend to plans regarding residential supports to include models that better support these individuals with complex needs. In partnership with existing providers who have expertise and success in serving these complex individuals, OPWDD should consider utilizing some of the resources outlined in this plan to offer demonstration project funding along with developing a learning community to support broader opportunities for information sharing and skill development among interested providers. Currently, individuals with multiple diagnoses are too often bounced between systems, as providers lack the capacity or expertise to meet the needs of these people. Earlier, effective interventions with youth and families could significantly improve outcomes and avoid the need for higher intensity services as these individuals move into adolescence and through adulthood.



This plan is a strong step in the right direction, but without bold action the service system will struggle to recover from years of previous underfunding coupled with our current crisis. OPWDD must stand firm in their commitment to transparency and must outline real, actionable steps to improve our service delivery system and support individuals and families within our communities. The plan needs both more accountability and clarity than it currently contains to ensure that the community is involved at every step of this process. A yearly progress report commitment does not reassure families that they will be involved in this process at every step of the way.

We appreciate the time taken to review feedback on this plan and stand ready to support OPWDD’s Outlined goals with the consideration and inclusion of the aforementioned comments. We look forward to OPWDD moving from planning to action in partnership with advocates, families, and the providers who serve them.