NCCC Response: In response to your statement, which precedes your question, it is important to note the following:

• The goal and activities conducted by the NCCC are designed to effect change in New York’s system of supports for persons with intellectual and developmental disabilities (IDD) that advances cultural competence, linguistic competence, diversity, equity, and inclusion for the diverse population of people who experience IDD and their families
• The NCCC is guided by this definition: Systems change requires planning and action to integrate programmatic, policy, and public awareness strategies to address root causes of deeply entrenched inequities at the individual, institutional, and societal levels. Again, the focus would be barriers to cultural and linguistic competence, diversity, equity, and inclusion across all components of the system of supports and services for persons with IDD in New York State.
• Systems change is a long-term effort. The OPWDD-NCCC Partnership for Systems Change is funded for three years. The project goal, objectives, and deliverables are designed to support OPWDD on its systems change journey by laying the foundation. Systems change requires the active engagement of all constituents in this process.

That said, and consistent with the project goal, the NCCC is conducting a number of activities that focus on policy ⎯ specifically to advance cultural and linguistic competence, diversity, equity, and inclusion, which include but are not limited to the following examples. The NCCC:

1. Is conducting a series of professional development activities for OPWDD’s Executive Leadership Team and other designated staff to examine the implications for both policy and practice of key terms and concepts in the diversity, equity, and inclusion space. This includes but is not limited to, lived experience, inclusion, multiple cultural identities, disability justice, intersectionality, historical trauma, and equity.
2. Will conduct a policy audit to assist OPWDD divisions to determine the extent to which existing policies advance cultural and linguistic competence, diversity, equity, and inclusion, and offer suggestions and guidance for amending and adding new policies accordingly.
3. Will convene a series of listening sessions in each of the five OPWDD regions to gather information on the experiences of families and persons with IDD about their interests and needs related to cultural competence, linguistic competence, diversity, equity, and inclusion. Results, along with recommendations, will be submitted to OPWDD in a report for consideration and action going forward.
4. Will pilot a Leadership Academy for persons with lived experience of IDD to support their inclusion in systems change efforts.

OPWDD Response: OPWDD is responsible for determining if a person has a developmental disability and is eligible to receive OPWDD supports and services. While the objectives and deliverables in NCCC’s current contract with New York State do not focus on eligibility determination, OPWDD is working on a number of improvements to the eligibility process including the creation of clearer materials to describe the Front Door process and OPWDD recently released new guidance for providers on the eligibility process that strives to create consistency across the state.

NCCC Response: Thank you so much for asking about our history and work. The mission of the NCCC is to increase the capacity of health care and mental health care programs to design, implement, and evaluate culturally and linguistically competent service delivery systems to address growing diversity, persistent disparities, and to promote health and mental health equity. The NCCC was established in 1995 and for 28 years has worked with local, state, federal, and international governmental agencies; family advocacy and support organizations; local hospitals and health centers; healthcare systems and health plans; mental health systems; developmental disabilities systems; school systems; colleges and universities; quality improvement organizations; national professional associations; and foundations. Currently, the NCCC is working with New York State, California, the District of Columbia and on several projects of national significance across states, territories, and tribal nations.

Many publications, products, and other resources are available on the NCCC website. Note that the NCCC has and continues to receive funding from multiple sources, and each project has different deliverables and outcomes. Please visit the NCCC website to learn more about our work and the numerous resources developed by our faculty, staff, and consultants over time.

NCCC Response: Thank you for your questions. It is certainly one our Evaluation Team appreciates. The NCCC will conduct evaluations across all project components and activities. This includes but is not limited to training, professional development, consultation, technical assistance, Community Forums, and other activities. Evaluation reports and data summaries for project activities will be provided to OPWDD to inform ongoing systems change efforts to advance cultural and linguistic competence, diversity, equity, and inclusion – during the three years of project implementation and, importantly, on an ongoing basis when the project ends. The project’s evaluation plan will probe generally: (1) the extent to which participants benefitted from project activities at the individual, organizational, and system levels; and (2) the capacity of participants (at the three aforementioned levels) to be actively engaged in systems change efforts to advance cultural and linguistic competence, equity, and inclusion. These and other measures will not only be indicators of success but also areas for ongoing growth over time.

NCCC Response: Thank you for this question because it raises such an important point. As described during the Community Forum, the OPWDD-NCCC Partnership for Systems Change is primarily a virtual project and is largely dependent on internet access. There are some project activities that will be conducted by telephone, or possibly in person, specifically for persons who experience IDD and family members. Systems change to advance cultural and linguistic competence, diversity, equity, and inclusion requires the active involvement of key constituent groups, and communities concerned with IDD supports and services in New York State. In addition to OPWDD, this means that persons with lived experience of IDD, their families, allies, community partners, advocates, and providers of supports and services all have an investment and role. These efforts will need to take place “on the ground” ⎯ at local, regional, and state levels. The NCCC welcomes the opportunity to partner with you and others to increase public awareness, share information and resources, and to lead advocacy efforts for systems change ⎯ supporting cultural and linguistic competence, diversity, equity, and inclusion within the New York State system of supports for persons who experience IDD.

NCCC Response: The NCCC project team agrees with your statement that anti-racism is not the same as diversity and inclusion, although they are interconnected. The NCCC thanks you and offers the following response to your straightforward questions.

Racism, historically and in the present day, is deeply rooted and affects all aspects of the US society. The long-term work of advancing cultural and linguistic competence, diversity, equity, and inclusion cannot be done without addressing racism and other “isms.” Within the design of this project’s many activities, the NCCC will also candidly address the impact of not only racism but also how race intersects with other social and cultural identities that result in harm to persons with IDD, their families, and the communities in which they live. Themes typically include but are not limited to, biases, stereotyping, discrimination, oppression, marginalization, ableism, stigma, intersectionality, minoritized groups and communities, power dynamics, racial, ethnic, and language disparities, and inequities.

Your second question could be read” “Why even bother since implicit biases and racism are built into the infrastructure, how can there be change?” If members of the NCCC project team did not have a degree of confidence that changes in systems can indeed occur, we never would have responded to OPWDD’s request to conduct this project. We stated this in response to another question, and it merits repeating here. Systems change requires planning and action to integrate programmatic, policy, and public awareness strategies to address root causes of deeply entrenched inequities at the individual, institutional, and societal levels. As put forth by the City and County of Denver, Colorado: "Systems change is confronting root causes of issues (rather than symptoms) by transforming structures, customs, mindsets, power dynamics, policies and rules, by strengthening collective power through the active collaboration of diverse people and organizations."

In addition to advocacy, leadership and partnership are needed to effect change. We, NCCC faculty and staff, ask that you join us, OPWDD, and other groups concerned with anti-racism, diversity, equity, inclusion, and social justice to make a change that benefits persons who experience IDD, their families, and the communities in which they live.

NCCC Response: Thank you for your participation in the Community Forums and for posing this important question. The Community Forums served as a preview and launch for the OPWDD-NCCC Partnership for Systems Change Project, which is funded through 2025. The NCCC looks forward to collaborating with all persons who experience IDD and their families across all cultural groups ⎯ including those who self-identify as immigrants, those from religious and faith communities, and those who do not affiliate with any religious group.

The project will depend on you and others to get the word out, to identify the new voices and encourage them to participate, and to support systems change efforts that advance cultural and linguistic competence, diversity, equity, and inclusion. Two of the NCCC’s guiding values and principles for community engagement of relevance to this project are:

• Cultural competence involves working in conjunction with natural, informal support and helping networks within culturally diverse communities (e.g. neighborhood, civic and advocacy associations; local/neighborhood merchants and alliance groups; ethnic, social, and religious organizations; and spiritual leaders and healers).
• Community members are full partners in decision-making.

You can view other values on the NCCC website.

As shared during the Community Forums, the NCCC will be conducting listening sessions with families and interviews with persons with IDD to learn from their experiences and document their interests and needs. We welcome your ideas. Please contact us at OPWDD-NCCCpartnership@georgetown.edu

OPWDD Response: OPWDD has received valuable feedback on enhancing the quality and accessibility of our materials, including language and plain language considerations. Throughout this project, the NCCC will gather valuable input across New York State on the cultural and linguistic interests and needs of minoritized and other communities. The NCCC will also provide technical assistance, consultation, professional development and training to guide OPWDD, providers, and CCOs in developing culturally and linguistically competent policies and practices for the diverse populations of people with developmental disabilities, their families, and the communities in which they live.

OPWDD Response: The goal of the OPWDD-NCCC Partnership for Systems Change Project is to "advance policies and practices of cultural and linguistic competence, diversity, equity, and inclusion in all components of the intellectual and developmental disability system of New York State." OPWDD aims to develop a vision and action plan to address community needs and overcome barriers. The objective is to create concrete plans and goals that facilitate easier access and utilization of services for people with developmental disabilities. The NCCC will provide expert support and consultation toward OPWDD’s goals. The specifics of how this will be achieved are guided by NCCC’s advice, including reviewing existing policies to ensure they align with OPWDD's commitment to cultural competence, linguistic competence, diversity, equity, and inclusion. The NCCC will make specific recommendations for how OPWDD can continue efforts toward systems change in these areas.

OPWDD Response: At the Virtual Community Forums, a statewide overview of data was provided, however, a more detailed regional breakdown can be found on the OPWDD website. The OPWDD-NCCC Partnership for Systems Change Project will engage with different regions, representatives, advocates, providers, and people with developmental disabilities and their families to apply The Disabilities Disparities Framework in order to define, collect and analyze data, better understand, and plan approaches to address disparities. The NCCC will convene provider forums to engage and support providers and CCOs in their efforts toward diversity, equity, and inclusion, and in meeting the needs of minoritized and other communities with developmental disabilities. The NCCC will prepare evaluation reports and data summaries for all project activities.

OPWDD Response: To learn more about OPWDD services and supports, the first step is to contact OPWDD by calling 866-946-9733 or emailing info@opwdd.ny.gov. You can also sign up for a scheduled Front Door Information Session. Later this year, OPWDD will be releasing short, easy to understand video modules on the process for accessing services through OPWDD’s “Front Door”. These modules will be available for viewing at your convenience and will include closed captioning in English, Simplified Spanish, and Chinese, plus voiceovers in English, Spanish, and Mandarin. The modules are being developed in partnership with two community-based organizations, the Chinese-American Planning Council and Sinergia.

More information about how to access OPWDD services may also be found on the Front Door page of OPWDD’s Website. The information on this page and all pages on the OPWDD website may be translated into the top 13 languages using the “Translate” feature found on the top left of the webpage:

OPWDD Response: OPWDD recognizes the importance of language, culture, and disability culture. We are committed to learning and investing in creating meaningful and representative engagement. The NCCC plans to conduct listening sessions for people with lived experience of developmental disabilities and their families to gather information about their interests and needs related to cultural competence, linguistic competence, diversity, equity, and inclusion. All people with lived experience of developmental disabilities and their families are welcome to attend. The NCCC also plans to engage and support providers and CCOs in their efforts toward advancing cultural and linguistic competence, diversity, equity, and inclusion. Throughout the project, we will gather valuable input across New York State with a goal to have representative engagement across the state. The NCCC will prepare evaluation reports and data summaries for all project activities.

OPWDD Response: OPWDD’s 2023-2027 Strategic Plan (also called the 5.07 Plan) includes specifics about policy and planning efforts toward these goals: 1) Strengthen our workforce, technology, and collaboration, 2) Transform our system through innovation and change, and 3) Enhance our person-centered supports and services. More information is available on the OPWDD Strategic Planning webpage.