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Independent Living News & Policy from the National Council on Independent Living

Comments to the National Institute on Disability, Independent Living, and Rehabilitation Research on Its Draft Long-Range Plan

March 20th, 2017

Attention: NIDILRR Long-Range Plan

Administration for Community Living
U.S. Department of Health and Human Services
Washington, DC 20201

The National Council on Independent Living (NCIL) is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands of organizations and individuals including: individuals with disabilities, Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other organizations that advocate for the human and civil rights of people with disabilities throughout the country.

NCIL would like to thank you for the opportunity to provide comments on the NIDILRR’s Draft Long-Range Plan, 2018-2023. Upon reviewing the proposed rule, we would like to submit the following comments:

Research and Development Agenda

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, positing that the move to the Administration for Community Living (ACL) presents new opportunities and expertise. We agree with the addition of this research focus. The streamlining of long term services and supports (LTSS) through Aging and Disability Resource Centers (ADRCs) and No Wrong Door (NWD) systems for people with disabilities and older adults has been a big focus of ACL. This presents NIDILRR with an opportunity to address the current status of this effort. Do ADRCs adequately reach people under age 65 with disabilities, particularly children, and those in their 40s and 50s where aging & disability begin to converge? Do identifiable barriers exist to the inclusion of disability organizations (like Centers for Independent Living (CILs)) as equal partners in these efforts?

Person-centered planning and services: The expansion – or lack of expansion – of person-centered planning should be a high priority. That said, it must be recognized that CILs practice consumer control, which is not the same as person-centered planning, although the two terms are often conflated. The shift towards greater consumer control through person-centered planning has not fully been embraced and requires a major cultural shift. NIDILRR would be well-positioned to examine this further. How is person-centered planning being implemented across systems and settings (including medical, vocational, and community settings) to truly give consumers more control? What is the return on investment of person-centered planning and the Independent Living movement’s consumer control model? What resources exist and what needs to be developed to increase consumer control across systems and settings?


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. What interventions currently or potentially could mitigate the impact of the benefits cliff? How can people with disabilities be supported by benefits but still have opportunities to advance their independent living and employment outcomes (i.e. like Medicaid Buy-In), recognizing that disability benefits must be used as offsets to the high cost of disability rather than subsidies for the inability to work? Under Accomplishments, the draft plan says that NIDILRR did “research on employment disincentives, approaches to mitigating them and employment incentives, by studying impact of SSI/SSDI and enrollment, Medicare and enrollment, health care reform.” Could NIDLRR do a meta-analysis of state and local innovations on mitigating the disincentives and measure any positive outcomes?

Young Adults: This research proposed in the long-range plan will be very helpful in keeping with the focus of WIOA. This section would be a good place to explore the role of CILs in Youth Transition. The final Rule on IL Services and Centers for Independent Living (81 Fed. Reg. 74682 (October 2016)) added as a core service “transition of youth who are individuals with significant disabilities, who were eligible for IEPs and who have completed their secondary education.” Questions to focus on in this research include: What do/can CILs do to positively impact transition? What are the current barriers and successes being experienced in this area?

Community Living & Participation

General Comment: There is a statement on page 4 (in section on State of Disabilities) that “navigating this complicated ‘system’ can require the assistance of others.” NCIL would like to suggest that this challenge is worth its own focus as a determinant of Community Living and Participation. Often, people cannot move home and live in the community because the system is so complex and they need knowledgeable, personalized, one-on-one assistance to benefit from public benefits and supports. Technology is both positive (online applications) and negative (automated disenrollment; high computer literacy needed) in this regard. NIDILLR could research the impact of complexity on access and continuity of support.

General Comment: With the passage of WIOA, CILs had a fifth core service added that included transition of individuals with disabilities from nursing homes or other institutions to home and community-based residences, with requisite supports and services, and providing assistance to individuals with disabilities who are at risk of entering institutions so that the individuals may remain in the community (Final Rule for CILs (81 Fed. Reg. 74682)). This additional requirement, which was based on a set of services many CILs have provided to people with disabilities for decades, provides an opportunity for NIDILRR. For instance, what is the return on investment of transition services? (What is the cost-savings from a home and community based waiver versus institutionalization? What are the true savings to states due to Medicaid HCBS waivers?) How do you measure the value and outcomes of services and supports from community based organizations and other wraparound supports that help people remain in the community? How can the impact and outcomes of diversion services be tracked and measured appropriately? Additionally, in the final rule, diversion services are provided to individuals with disabilities who self-identify as being at risk of institutionalization. This could present an opportunity to explore the meaning of “self-identify” in real-life settings to inform policy.

Transportation Access: Transportation options are rapidly expanding with the emergence of Transportation Network Companies (TNCs) like Uber and Lyft, and with the development of autonomous (“self-driving”) vehicles. It is vital that people with disabilities be included in these systems. That said, as the U.S. plans to embark on a major infrastructure plan, it is also important to direct attention to ensuring that improvements be made for people with disabilities throughout the entire system. It is true that as choices have expanded for the general population, people with disabilities have not been included. But that is on top of the existing exclusion of people with disabilities from much of the existing infrastructure throughout the country. How can the accessibility of existing transportation systems be improved, including paths of travel; first- and last-mile travel; transportations stops, stations and shelters; emergency transportation options; road, rail, and air travel; and paratransit? How can paratransit be maintained or improved where there are few resources for public transit and regulated transit (taxis)?

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. Research in this area is lacking and can also be used to promote the community living outcomes of people with disabilities. Areas of focus would include the workforce shortage, the impact of availability of PCAs on transition efforts and general community living and participation, and the impact of the Department of Labor’s changes in federal labor rules on the labor force and on unwanted institutionalizations.

Cross-Cutting Research and Development Activities

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.” The further development of technologies that can increase the ability of people with disabilities to live independently in our communities is critically important. However, technology cannot help people with disabilities who cannot access that technology. People with disabilities are disproportionately likely to live in poverty, lack access to basic technology, and experience isolation. These factors can strongly influence access to innovative technologies that would otherwise be beneficial, so we recommend that access be taken into account when considering research priorities.

Disability Statistics Research

Context: While several national surveys have adopted the 6-question sequence of disability identifiers included in the American Community Survey (ACS), there is not a clear relationship between these identifiers and other federal definitions of disability (i.e., ADA, SS) or federal program requirements (i.e., SSDI, ABLE). NIDILRR could seek to bridge and/or compare research on disability statistics under ACS identifiers to the other definitions in use today with goal of making language more consistent across systems, and also changing definitions that have negative impact on health and function, employment and community (like the requirement to prove inability to work for SSI/SSDI).

Americans with Disabilities Act – Technical Assistance, Training, and Research

Research and Development Agenda: We support the goals in this section. There may also be an opportunity here to further explore the current and potential future relationship / interactions between the ADA National Network and the business community. What research has been done on the true cost of making building and businesses accessible to people with disabilities while also taking into account the added value of these changes? The disability community, which includes our families and friends, has a tremendous purchasing power. Hiring people with disabilities and making businesses accessible to the disability community is an opportunity for businesses to expand their bottom line. Has there been research on the economic value added to businesses/companies who hire people with disabilities? How can we validate and utilize existing data?

The 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. Thank you again for allowing us the opportunity to provide comments. Should you have any questions, please contact Kelly Buckland, Executive Director, or Jeff Hughes and Ann McDaniel, Co-Chairs of the NCIL Rehabilitation Act Subcommittee.