Get to Know Our Community Research Partners: Parent Network of WNY

Parent Network of Western New York (PNWNY) is a not-for-profit agency that provides education and resources for families of individuals with special needs and for professionals. Known for its one-on-one support and education through resources, workshops, and support groups, Parent Network works to assist families of individuals with disabilities to understand their disability and navigate the support service system. Since 2001, the organization has served around 10,000 people each year.

The University at Buffalo Clinical and Translational Science Institute (CTSI) partners with Parent Network to ensure that people with disabilities have a voice in research. In addition, the organization has worked with the CTSI to consult on community advisory boards and to explore research methods.

Buffalo Research News recently spoke with PNWNY Marketing, Outreach, and Development Director Destiny Y. Lopez about the organization’s goals and research interests.

What is Parent Network of WNY’s mission/vision?

The mission of PNWNY is to support, educate, connect, and empower young people with disabilities and their families to reach their full potential. Our work aims to promote equity, reduce stigma and trauma, and promote a rich, diverse, and inclusive community benefiting all families, individuals, organizations, and systems. We serve all eight counties in the Western New York region, with a focus on the area’s underserved and diverse communities, especially those with highest rates of poverty and lowest social determinants of health.

Why did Parent Network become a partner in research?

Parent Network is committed to providing up-to-date and accurate information about disabilities, supports, and services. Partnerships with researchers provide us with the information we need to ensure our services are meeting the needs of our community.

What kind of research initiatives have you collaborated on with UB?

Members of our leadership team supported UB’s recently awarded proposal for the National Artificial Intelligence Research Institutes that will support speech therapy services for youth with disabilities. We helped to identify needs, especially as related to the shortage of service providers. We shared parent perspectives and how this technology could be woven into special education and other disability services.

Community advisory boards (CABs) are a helpful tool for researchers to really know their community of impact. What are your thoughts on the use and importance of CABs?

PNWNY relies heavily on input from the community to ensure we are meeting the needs of those we serve. CABs provide the opportunity to learn about unmet needs and how to best serve individuals with disabilities, their families, and the professionals that serve them. A CAB can be a valuable link between the efforts of researchers and the realities of the work within communities — both researchers, and, in this instance, Parent Network of WNY can greatly benefit from differing and shared perspectives and voices.   

How did COVID-19 impact your efforts, and your goals now and in the future?

We were able to maintain our high-quality, individualized services to families and caregivers of children with disabilities as well as local school districts around special education and family engagement despite the shift to remote operations at the height of the pandemic. Our agency was able to respond quickly to identify and support the needs of parents and family members who suddenly were juggling enormous responsibilities. We shifted our method of service delivery to online education and support events and embraced virtual coffee hours and meet-ups. School meetings also became virtual, and we developed tip sheets for parents and provided support so they could actively participate in the educational planning for their child. Moving forward we will offer both virtual and in-person events to ensure we are meeting the needs of families.

Is there anything else you would like to share about Parent Network? And what’s the best way to keep up with your calendar?

The majority of Parent Network of WNY’s staff and board members are parents of and/or educators of children with disabilities, which provides a unique perspective, personal experience, and empathy to the families we reach. The best way to keep up with our event calendar is on our website — parentnetworkwny.org or parentnetworkwny.org/events.