This presentation covers the basic Federal legislation and rules that govern restrictions on lobbying for grantees that have been awarded Federal funds. A definition of lobbying is discussed and the differences between lobbying and sharing of information are described, with examples. Participants will be able to ask questions during or after the presentation.

Integrated knowledge translation (IKT) seeks to engage and integrate knowledge users into multiple stages of a given research process. In this way, IKT seeks to promote the development of meaningful partnerships (researchers, knowledge users, others) that work in concert to co-produce knowledge that is more likely to be successfully translated into action or practice. Knowledge Users can be defined in many ways, including patients, caregivers, whole communities and organizations/institutions. This session draws on the Canadian context, and in particular, that of a National Organizations’ experiences having implemented a formal Knowledge User engagement program. Affordances, challenges, learnings from an organizational perspective will be described as well as unanticipated outcomes.

Historically, many of this nation’s communities have been oppressed, marginalized, and discriminated against. Historical trauma is defined as “cumulative emotional and psychological wounding across generations, including the lifespan, which emanates from massive group trauma.” For some within these communities, their history in the US, territories, and tribal nations is compounded and perpetuated by current day realities rooted in inequity. Those attempting to engage these communities are often challenged by apathy, lack of trust, and reticence based on both the past and current lived experience of many community members. This presentation will explore: (a) selected racial, ethnic, and cultural groups that have experienced historical trauma; and (b) how disability organizations and their personnel can historical trauma across diverse racial, ethnic, disability, and cultural groups; and (b) what leaders acknowledge these injustices and forge relationships that foster mutual respect, understanding, and ultimately healing.

Objectives

Participants will

1. Identify and describe the historical and present-day trauma experienced by members of diverse racial, ethnic, disability, and cultural communities.
2. Differentiate between community outreach and community engagement.
3. Describe six culturally and linguistically competent approaches to engage communities affected by historical trauma including community members at the nexus of disability, race, ethnicity, and culture.

Motivated individuals and community organizations are the engines that can drive policy change. In this panel, we will hear from three leaders in the disability community who have been leading the charge of creating policy by and for people with disabilities. Liz Weintraub from the Association of University Centers on Disabilities will discuss the impetus for Tuesdays with Liz weekly video series. Jeff Johnson will discuss his efforts at Missouri People First focused on segregated education and the school to prison pipeline. Clark Rachfal will round out the panel by discussing his role as Director of Advocacy and Governmental Affairs at the American Council of the Blind. Responding to questions from the moderator and audience, these experts will discuss the role of stakeholders in all parts of policy development and implementation.

The UK International Public Policy Observatory (IPPO) on COVID-19

IPPO is a research knowledge exchange centre for COVID-19 where research evidence is identified and mobilized on the basis of policy and practice demand. It has five main components of: (i) engagement with policy demand for research evidence; (ii) evidence synthesis to meet that demand, (iii) representation of the different nations of the UK; (iv) trackers of policy responses to the pandemic globally; and (v) a journalist to help combine and publicize these different strands. It is an experimental model for engaging research demand and use funded by the UK Economic and Social Research Council.

Personifying policy: the Disability Stories Project and the films of Jason DaSilva

Disability Stories Project, is a KT project conducted by the Collaborative on Health Reform and Independent Living. Award-winning documentary filmmaker Jason DaSilva will discuss his how he uses his own experience navigating the physical barriers of NYC, and the complex cultural and political barriers that American society imposes on people with disabilities, to challenge public policies on health insurance and accessibility. He will show clips from his New York Times editorial on Medicaid policy, The Disability Trap, and footage from his latest film, When They Walk, including a profile of AXS Map (a consumer-directed effort to evaluate access in local businesses and community buildings in major metropolitan areas).

This session draws from Through the Looking Glass’ 39 years of response to the critical lack of resources and the barriers experienced by parents with disabilities. It describes the synergy between intervention, research, knowledge dissemination, and public policy action in a disability culture-based organization.

Research Results to Policy Outcomes: From Asset Accumulation and Tax Policy Research to the ABLE Act

From 2003 to 2012, NIDRR funded National Disability Institute (NDI) and a group of collaborating universities and organizations to conduct research to advance savings, asset development and economic freedom for individuals with disabilities. As a result of consumer surveys and focus groups and analysis of data from tax filers with disabilities, their utilization of the Earned Income Tax Credit and identification of barriers and facilitators to advance economic well-being for individuals with disabilities, research findings began to develop a roadmap for policy change to move the targeted audience out of poverty. The research conducted reinforced the importance of participatory action research. From the beginning, people with disabilities were engaged to formulate research questions, serve as members of the research team, analyze data, and help formulate findings. The knowledge translation activities involved individuals with disabilities and their families and disability-related organizations to begin to identify policy solutions that helped inform the development of the Achieving a Better Life Experience (ABLE) Act. The ABLE Act, passed by Congress in 2014, responded to identified barriers to savings and asset building with a unique strategy to authorize tax-advantaged savings and investment accounts to respond to the short- and long-term financial needs of individuals with disabilities. The passage of the ABLE Act was led by parents, family members and individuals with disabilities who provided to policy makers personal stories of their financial challenges of the extra costs of living with a disability. This qualitative evidence complemented the findings from the two NIDRR-funded research projects. As the ABLE Act continues to grow in impact, it offers a living laboratory to further assess and document changes in the quality-of-life experience for people with disabilities related to employment, independent living, and community participation.

A former staff director and chief counsel to the US Senate Subcommittee on Disability Policy will explore how disability-related research (particularly NIDILRR-funded research) has informed the policymaking process and provide tips on how researchers can present their research in a form that maximizes the likelihood that it will be used by policymakers and their staff. Examples will include COVID-19 (including disability status as a demographic determinant), Section 501 and Section 503 of the Rehabilitation Act (affirmative action by federal agencies and government contractors), early intervention for infants and toddlers with disabilities), home and community-based services, personal assistance services, employment first policy, supported and customized employment, and website accessibility.