The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Draft Long-Range plan for the period 2018-2023 is comprehensive and provides logical next steps to advance research in the field of disability, independent living, and rehabilitation. To support and strengthen the plan, NCIL’s Rehabilitation Act Subcommittee submitted comments. The Administration for Community Living (ACL)/NIDILRR responded to the submission by saying, “Just got done reading the comments and wanted to let you know that I thought your comments were very thoughtful and helpful to us. Thank you.”
Below is a summary of the committee’s input to NIDILRR’s Research and Development Agenda.
NCIL’s Summary Input to the NIDILRR Draft Long-Range Plan for the Period 2018-2023
Health and Function
- Aging with and into Disability: NIDILRR’s Draft Long-Range Plan introduces “Aging with and into Disability” as a new research area. This presents NIDILRR with an opportunity to address efforts to streamline long-term services and supports. Are there barriers to having Centers for Independent Living (CILs) as equal partners in these efforts?
- Person-centered planning and services: This should be a high priority. The shift towards greater consumer control through person-centered planning has not fully been embraced and requires a major cultural shift. How is person-centered planning being implemented across systems and settings to truly give consumers more control?
- Employment Disincentives: NCIL strongly agrees that research needs to move beyond the identification of disincentives to employment to a strategic focus on the relationships among poverty, income assistance and employment. NCIL sees this as an urgent issue in the disability community, with several key areas that need specific focus so people with disabilities can be supported by benefits but still have opportunities to advance their independent living and employment outcomes.
- Young Adults: The research proposed in the long-range plan is a good place to explore the role of CILs in WIOA’s Transition Services requirements for students and youth with disabilities, including how workforce and vocational rehabilitation can work with CIL’s on pre-transition and school to work services.
Community Living & Participation
- NCIL suggests that systems navigation is worth its own focus as a determinant of Community Living and Participation. NIDILLR could research the impact of complexity on access and continuity of support.
- CILs fifth core service, which included Nursing Home transition, provides an opportunity for NIDILRR to measure the economic impact and return on investment of home and community based service; as well as quantifying and measuring cost savings as a result of diversion services to individuals at risk of institutionalization.
- Transportation Access: As the U.S. plans to embark on a major infrastructure plan it is important to direct attention to ensuring that improvements be made for people with disabilities throughout the entire system.
- Family Caregivers: NCIL strongly supports NIDILRR’s efforts to develop and implement a research agenda on family caregivers of people with disabilities. We suggest that a similar effort be focused on personal care attendants (PCAs)/ personal assistants/ paid caregivers.
Technology for Access and Function
- Future Research and Development: NCIL supports NIDILRR’s intention to “continue to support research and development of assistive technology applications and devices that facilitate positive outcomes for people with mobility, cognitive, sensory, and communication disabilities.” NCIL strongly recommends that access to these technologies be taken into account when considering research priorities.
Disability Statistics Research
- NIDILRR could research various identifiers of “disability” used in research as well as definitions of disability in use today with a goal of making identifiers and definitions more consistent across systems.
Americans with Disabilities Act – Technical Assistance, Training, and Research
- Research and Development Agenda: NCIL suggests exploring the current and potential future relationship / interactions between the ADA National Network and the business community.