National Disability Policy: A Progress Report 2024 PDF

National Disability Policy: A Progress Report, 2024 National Council on Disability October 31, 2024 National Council on Disability (NCD) 1331 F Street NW, Suite 850 Washington, DC 20004 National Disability Policy: A Progress Report, 2024 National Council on Disability, October 31, 2024 Celebrating 40 years as an independent federal agency. This report is also available in alternative formats. Please visit the National Council on Disability (NCD) website (www.ncd.gov) or contact NCD to request an alternative format using the following information: [email protected] Email 202-272-2004 Voice 202-272-2022 Fax The views contained in this report do not necessarily represent those of the Administration, as this and all NCD documents are not subject to the A-19 Executive Branch review process. National Council on Disability An independent federal agency making recommendations to the President and Congress to enhance the quality of life for all Americans with disabilities and their families. Letter of Transmittal October 31, 2024 President Joseph R. Biden Jr. The White House 1600 Pennsylvania Avenue, NW Washington, DC 20500 Dear Mr. President: The National Council on Disability (NCD) is pleased to submit the enclosed 2024 Progress Report, which provides a statutorily required status update on the nation’s advancements and successes in disability policies as well as recommendations concerning the challenges that remain and require attention. NCD is required to provide this annual report to assess the status of progress in achieving disability policies, identify any new and emerging issues, and provide recommendations. In this report, NCD outlines points of progress in several policy areas, while also making recommendations pertaining to the still outstanding challenges that remain. As explained in this report, several significant policy developments occurred since our last progress report, with focused attention now shifting to their successful implementation to make the policies meaningful and impactful to the daily lives of people with disabilities. This report highlights, in particular, issues pertaining to the health of people with disabilities as well as issues related to employment, travel, accessible technology, housing, and the US census. The report also discusses the needs of people with disabilities within tribal lands. NCD has identified these areas of focus as being particularly useful barometers this year of both the advancements and still outstanding needs of people with disabilities from a policy perspective. NCD looks forward to assisting this Administration and Congress in their efforts on behalf of people with disabilities to advance policy that promotes the goals of the Americans with Disabilities Act— equality of opportunity, economic self-sufficiency, independent living, and full participation of people with disabilities in all aspects of society—regardless of type or severity of disability. Respectfully, Claudia L. Gordon Chair (The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of the U.S. House of Representatives.) 1331 F Street, NW Suite 850 Washington, DC 20004 202-272-2004 Voice 202-272-2074 TTY 202-272-2022 Fax www.ncd.gov National Council on Disability Members and Staff Members Claudia L. Gordon, Chair Emily Voorde, Vice Chair Hoskie Benally Jr. Sascha Bittner Theo W. Braddy Shawn Kennemer (abstained) Risa Jaz Rifkind Neil Romano Staff Anne C. Sommers McIntosh, Executive Director Joan M. Durocher, General Counsel & Director of Policy Lisa Grubb, Director of Administration, Finance, and Operations Stacey S. Brown, Staff Assistant Kimie Eacobacci, Legislative Affairs Specialist Netterie Lewis, Administrative Support Specialist Amy Nicholas, Senior Attorney Advisor Nick Sabula, Public Affairs Specialist Amged M. Soliman, Senior Attorney Advisor Ana Torres-Davis, Senior Attorney Advisor Keith Woods, Financial Management Analyst 2 National Council on Disability National Council on Disability’s Mission and History Mission The National Council on Disability’s (NCD) mission is to be a trusted advisor in collaboration with people with disabilities to the President; Congress; federal entities; state governments, tribal communities, and local governments; and other entities and organizations. NCD fulfills its advisory roles regarding disability policies, programs, procedures, and practices that enhance equal opportunity by convening stakeholders to acquire timely and relevant input for recommendations and action steps; gathering and analyzing data and other information; engaging and influencing current debates and agendas with current research; identifying and formulating solutions to emerging and long-standing challenges; and providing tools to facilitate effective implementation of policies. History NCD has a proud history. It was first established as the National Council on the Handicapped, a small advisory council under the Department of Health, Education, and Welfare, by the Rehabilitation, Comprehensive Services and Developmental Disabilities Amendments of 1978. NCD became an independent agency in 1984 by Public Law 98-221, the Rehabilitation Amendments of 1984, and finally had its name changed by Public Law 100-630, the Handicapped Programs Technical Amendments Act of 1988, on November 7, 1988. At that time, NCD was charged with reviewing federal disability programs and policies. In 1986, NCD recommended enactment of an Americans with Disabilities Act and then drafted the first version of the bill that was introduced in Congress in 1988. NCD is an independent federal agency and is composed of nine members: four appointed by the majority and minority leadership in Congress and five appointed by the President. NCD provides advice to the President, Congress, and executive branch agencies to advance policy that promotes the goals of the Americans with Disabilities Act—equality of opportunity, economic self-sufficiency, independent living, and full participation in all aspects of society—regardless of type or severity of disability. A more comprehensive history of the agency is detailed in NCD’s 1997 publication titled Equality of Opportunity: The Making of the Americans with Disabilities Act. National Disability Policy: A Progress Report, 2024 3 4 National Council on Disability Contents Executive Summary...................................................... 7 Acronym Glossary........................................................ 9 Section 1: Health Status and Healthcare...................................... 11 Health Disparities of People with Disabilities......................... 11 Healthcare Disability Nondiscrimination............................ 15 State Expansion of Oral Healthcare................................ 16 Including People with Disabilities in Clinical Trials.................... 16 Section 2: Transportation................................................... 19 Recommendation by NCD Concerning Transportation.............. 19 Ground Travel Developments:................................. 20 US Access Board Developments:.............................. 20 Section 3: Employment................................................... 23 Recommendation by NCD Concerning the AbilityOne Program..... 23 Recommendation by NCD Concerning the US Department of Labor and Section 14(c) Certificates.......................... 24 Recommendation by NCD Moving Forward Concerning Tribal Land Vocational Rehabilitation Developments.................. 24 Section 4: Housing After Disasters.......................................... 27 Section 5: Counting the Disability Population................................. 29 US Census.................................................... 29 Recommendation Made by NCD Concerning the US Census....... 29 Section 6: Technology.................................................... 31 Recommendation by NCD Moving Forward Concerning Digital Access Regulation................................... 31 National Disability Policy: A Progress Report, 2024 5 Section 7: Other Issues to Watch........................................... 33 Tax Code...................................................... 33 Section 8: Conclusion.................................................... 35 Endnotes............................................................... 37 6 National Council on Disability Executive Summary P er its authorizing statute, the National of the 2024 Federal Aviation Administration Council on Disability (NCD) is mandated Reauthorization Act marked significant progress to issue an annual report concerning for people with disabilities. The Act enhances disability policy. The report is meant to present, access for passengers with disabilities by, as appropriate, available information on progress among other things, requiring airlines to made in areas of health, transportation, accommodate seating requests for disability- employment, housing, technology, and other related needs, setting new training standards vital topic areas. The report also includes for airline personnel who handle and store recommendations for policy changes that remain wheelchairs to prevent damage, and providing necessary. The following serves as key highlights grants to fund airport accessibility upgrades. of what has been an eventful year in disability The Act mandates that all medium and large policy development. airports install or maintain at least one universal There have been notable developments in changing station in each terminal and requires the field of healthcare for people with disabilities clearly visible signage near the entrance to this past year. It is an aspect of disability inform travelers of their locations. With respect policy that has long been in need of significant to the regulatory process, the US Department advancements. While there is still much work of Transportation proposed a regulation that to be done, NCD applauds the designation of would ensure airline passengers who use people with disabilities as a “Health Disparities wheelchairs can travel safely and with dignity. Population” by the National Institute on Minority The proposed rule would set new standards Health and Health Disparities. This vital step for prompt, safe, and dignified assistance significantly opens up opportunities for research and mandate enhanced training for airline related to disability. Likewise, NCD commends the employees and contractors who physically final Section 504 (of the Rehabilitation Act) rule by assist passengers with disabilities and handle the Office for Civil Rights of the US Department passengers’ wheelchairs. The rule would further of Health and Human Services for its inclusion specify actions that airlines must take to protect of significant requirements ensuring the use of passengers when a wheelchair is damaged accessible medical and diagnostic equipment. during transport. There have been substantial advancements In the realm of technology, the US in travel policy and law. The signing into law Department of Justice issued its final rule National Disability Policy: A Progress Report, 2024 7 revising the regulation implementing Title II of While these advancements are commendable, the Americans with Disabilities Act. The rule there is undoubtedly still much to do in the establishes specific requirements, including the coming year across various areas of disability adoption of technical standards to ensure that the policy. This report outlines the corresponding services, programs, and activities offered by state recommendations NCD proposes to address and local government entities through web and these challenges. mobile applications are accessible to the public. 8 National Council on Disability Acronym Glossary ACAA Air Carrier Access Act ACL Administration for Community Living ACS American Community Survey ADASP Americans with Disabilities Act Stations Program AMDE Accessible Medical and Diagnostic Equipment CANAR Consortia of Administrators for Native American Rehabilitation CSAVR Council of State Administrators of Vocational Rehabilitation CT Clinical Trial DOJ US Department of Justice DOL US Department of Labor DOT US Department of Transportation FAA Federal Aviation Administration FDA US Food and Drug Administration FDORA Food and Drug Omnibus Reform Act FEMA Federal Emergency Management Agency HEADs UP Act Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population Act HHS US Department of Health and Human Services ICDR Interagency Committee on Disability Research I/DD Intellectual and Developmental Disabilities IFR Interim Final Rule NCD National Council on Disability NIDILRR National Institute on Disability, Independent Living, and Rehabilitation Research NIH National Institutes of Health NIMHD National Institute on Minority Health and Health Disparities SMUP Special Medically Underserved Population VR Vocational Rehabilitation National Disability Policy: A Progress Report, 2024 9 10 National Council on Disability Section 1: Health Status and Healthcare Health Disparities of People with you are a person with a physical, intellectual, or Disabilities developmental disability, your life expectancy is less than that of someone without disabilities.1 For years, the National Council on Disability You are more than three times as likely to have (NCD) has espoused that the predicate to a arthritis, diabetes, and a heart attack.2 You are person’s ability to live, learn, and earn is to attain significantly more likely to have unmet medical, and maintain access to appropriate healthcare— dental, and prescription needs.3 mental, physical, and overall well-being. For Following consultation with people with people across all categories of disabilities, disabilities as well as a multidisciplinary team attaining and maintaining good health has been of disability and health policy experts, and after elusive due in part to extensive barriers and years of NCD’s own health disparities research, bias within the US healthcare system. The US NCD released and continues to regularly healthcare system has, for generations, failed update its Framework to End Health Disparities to appropriately consider and treat 26 percent for People with Disabilities (Framework). The of the US population, so much so, in fact, Framework noted five core recommendations that many people with disabilities utilize the that, if achieved, will be significant steps forward healthcare system only for acute episodes or in the journey to end health disparities for people basic disease management instead of disease with disabilities. prevention or general wellness and may even view the healthcare system as a source of potential harm. Much of the well-documented Recommendations Made by NCD barriers and bias that exist within the current Concerning Health Disparities of People US healthcare system are due to an absence with Disabilities of even minimal disability cultural competency 1. The US Department of Health and Human curricula in medical, nursing, and other health Services (HHS) should designate people with professional schools. The ultimate product disabilities as a Health Disparities Population. of these barriers and bias is decades-long Health Disparities Population Designation of significant health disparities between people with People with Disabilities Developments: disabilities and their nondisabled counterparts, In September 2023, the Director of the National which are particularly acute in certain disability Institute on Minority Health and Health Disparities subpopulations. Today, in the United States, if (NIMHD) designated people with disabilities as National Disability Policy: A Progress Report, 2024 11 a Health Disparities Population.4 This designation and Accessibility for Developmentally Disabled will encourage, through funding, significant and Underserved Population Act (HEADs UP research into the healthcare concerns of people Act), which NCD helped draft. This bill seeks with disabilities by the National Institutes of to designate all people in the United States Health (NIH). Prior to the announcement, NCD with intellectual and developmental disabilities had extensively advised NIMHD of the justification (I/DD) as a “Special Medically Underserved in support of this Population” (SMUP), recommendation and thereby providing In September 2023, the Director of was pleased to see this significant government the National Institute on Minority vital and momentous programs aimed at designation be made. Health and Health Disparities increasing access of With this decision, HHS (NIMHD) designated people with people with I/DD to agreed that research is disabilities as a Health Disparities essential healthcare needed to understand services (including Population. the barriers and unmet federal funding for health healthcare needs faced by people with disabilities centers and public health infrastructure such and to develop effective interventions to address as federally qualified health centers; eligibility them, and this research would be facilitated to apply for federal funding to develop and through this designation. NCD commends NIH for operate community health centers; access taking this significant step of formally recognizing to loan repayment and training programs in the health disparities faced by people with workforce development and training programs for disabilities. This acknowledgment will undoubtedly providers who treat the underserved population, lead to increased including the National investment in research Health Service Corps aimed at addressing NCD’s position is that all people scholarships, among and eliminating these with disabilities warrant such a others). NCD’s position disparities. designation based on the body of is that all people with 2. Congress should disabilities warrant such a health disparities research; therefore, designate people with designation based on the NCD recommends passage of the disabilities as a Special body of health disparities Medically Underserved HEADs Up Act, which would mark research; therefore, NCD Population under the progress toward that end... recommends passage Public Health Service of the HEADs Up Act, Act. which would mark progress toward that end by Special Medically Underserved Population designating an important subpopulation with Designation of People with Disabilities specific health disparities. Developments: Additionally, in the US Senate, Sens. Robert NCD continues to work closely with Members P. Casey Jr., Tim Kaine, Tammy Duckworth, of Congress regarding the Healthcare Extension and Jeff Merkley introduced the Health Equity 12 National Council on Disability for People with Disabilities Act, which seeks serving heads of medical education programs is to modify certain grants available to health being organized by the Accreditation Council for centers that offer primary health services to Graduate Medical Education and the Association medically underserved populations to ensure of American Medical Colleges around this that members of such populations with important issue for March 2025. This policy step disabilities receive accessible health services. would no doubt serve as a crucial component While not seeking a SMUP designation, the toward ending the health disparities of people bill would amend the Public Health Services with disabilities and must continue to be Act to clarify that among the groups already pursued as a matter of policy. classified as medically underserved populations, 4. Improved health data collection for people the needs of people with disabilities will be a with disabilities should be required across US priority to reduce health disparities. Under this government programs. disability priority, health centers across the Improved Health Data Collection for People United States would also be able to use quality with Disabilities Developments: improvement grants to focus on improving The National Institute on Disability, Independent accessibility accommodations and reducing Living, and Rehabilitation Research (NIDILRR) barriers to care within their clinics, which may and the Interagency Committee on Disability improve healthcare services to millions of Research (ICDR) had relaunched and reimagined Americans with disabilities. NCD supports this the Disability Data and Statistics Working Group. effort as consistent with the principles of NCD’s This working group focuses on establishing advisement in its Framework. greater coordination and collaboration related 3. Standardized disability clinical care to disability statistics, terminology, and data curricula should be required of all US medical, collection. The ICDR released a toolkit, Surveying nursing, and other healthcare professional the Landscape of Disability Data and Statistics, schools and disability competency education that catalogs federal research and resources and training of all medical, nursing, and other and outlines the current federal landscape of healthcare professionals. disability data and statistics, with the intention of Standardized Disability Clinical Care and promoting interagency collaboration at the federal Competency Education Developments: level.5 NCD has collaborated with relevant Further, the Administration for Community nongovernment organizations to raise Living leads a cross-agency initiative called I/ awareness of the need to include disability DD Counts—an initiative established to maintain clinical care and competency training in accurate data on the prevalence of I/DD in the medical and nursing education programs. United States and its territories and to improve These organizations include the Association of the collection, analysis, and interpretation of the American Medical Colleges, the Accreditation health-related data of people with I/DD. Its vital Council for Graduate Medical Education, and The focus continues. Joint Commission (on hospital accreditation), 5. Accessible medical and diagnostic among others. A major national conference equipment should be required. National Disability Policy: A Progress Report, 2024 13 Accessible Medical and Diagnostic Equipment that consumers use in their homes are accessible Developments: for people with vision disabilities and disabilities The final revised Section 504 (of the that impact dexterity. Rehabilitation Act) rule by the Office for On the enforcement front, HHS, Office for Civil Rights of the HHS included significant Civil Rights, entered into a settlement with the requirements mandating the use of accessible New Jersey Imaging Network to resolve a civil medical and diagnostic equipment (AMDE). rights complaint from an individual who uses The final rule adopts the Architectural and a wheelchair and was denied mammography Transportation Barriers Compliance Board’s because of her disability, based on Section 504 (US Access Board) standards for AMDE, which of the Rehabilitation Act and Section 1557 were voluntary, and makes them required and of the Affordable Care Act, which prohibit enforceable. The final rule also requires that discrimination on the basis of disability. Together, within two years of the effective date, recipients these laws protect people with disabilities from using examination tables and/or weight scales discrimination in any program or activity receiving have at least one accessible version of the funding from HHS. equipment. This historic The settlement rulemaking cited to and ensures that New The final revised Section 504 (of the incorporated many of Jersey Imaging Rehabilitation Act) rule by the Office NCD’s research-based Network will comply recommendations, for Civil Rights of the HHS included with the law, including including its repeated significant requirements mandating newly issued rules, by advisement to require the use of accessible medical and having processes and AMDE.6 diagnostic equipment (AMDE). procedures in place to Additionally, NIH is provide people with working on developing accessible home medical disabilities the same access to care as those tests for people with disabilities. NIH seeks without disabilities by providing the same to make improvements in the design of home appointments and ensuring access to appropriate medical tests in three focus areas: individuals equipment. who have low or no vision, individuals with fine Under the terms of the settlement, New motor skill difficulties, and older adults. Issues Jersey Imaging Network will address the to be addressed include (1) the need for more following: intuitive test packaging, (2) the need for clearer Revise its existing policies and practices to instruction, (3) the need for easier maneuver test make appointments available during normal components (small test components, difficult business hours to all patients, document to manipulate, frequent accidental test damage requests for mobility assistance or other or contamination), and (4) the need for more reasonable accommodations, provide descriptive results (currently, they often lack a patients with a description of available clear readout and lack a nonvisual means of result accommodations, and notify patients of interpretation). The goal is to ensure that tests their rights under the law. 14 National Council on Disability Develop a process for individualized respect to the withholding of life-sustaining assessment of patients who may require care, medical futility determinations and reasonable accommodations. organ transplant discrimination, organ Train its staff on the new policies to donation, and other areas relevant to ensure employees understand practices healthcare or disability discrimination by and procedures for interacting with HHS entities. The regulations should ensure and accommodating individuals with neither long-term survivability nor quality of disabilities, techniques for safely assisting life is taken into account in making healthcare individuals with limited mobility to ensure determinations. their safe access to and use of medical Healthcare Disability Nondiscrimination equipment and examination tables, and Developments: New Jersey Imaging Network’s various As previously mentioned, in May 2024, HHS nondiscrimination and nonretaliation issued a final rule to advance equity and bolster obligations. protections for people with disabilities.7 As was recommended by NCD, the rule ensures Notify patients, staff, and the public of that medical treatment decisions by those who rights and protections afforded them by receive federal financial assistance from HHS federal law and how to file a discrimination are not based on biases or stereotypes about disability-based complaint with HHS. individuals with disabilities, judgments that an individual with a disability will be a burden on Healthcare Disability others, or beliefs that the life of an individual with Nondiscrimination a disability has less value than the life of a person Pervasive discrimination on the basis of without a disability. disability in accessing medical care leads to The final rule adds new provisions that significant health disparities and poorer health clarify existing requirements under Section 504 outcomes for individuals with disabilities. This prohibiting recipients of financial assistance pattern of discrimination appears in a variety of from HHS from discriminating on the basis contexts including organ transplantation, life- of disability in their programs and activities, sustaining treatment, participation in clinical including in healthcare, child welfare, and research, and crisis standards of care that may other human services. The final rule includes go into effect when healthcare resources are new requirements prohibiting discrimination limited. in the areas of medical treatment; the use of value assessments; web, mobile, and kiosk Recommendation Made by NCD accessibility; and requirements for accessible Concerning Healthcare Disability medical equipment, so that persons with Nondiscrimination disabilities have an opportunity to participate 6. HHS should issue regulations clarifying in or benefit from healthcare programs and the obligations of covered entities under activities that is equal to the opportunity Section 504 of the Rehabilitation Act with afforded others. It also adds a section on child National Disability Policy: A Progress Report, 2024 15 welfare to expand on and clarify the obligation provide no such benefits or emergency benefits to provide nondiscriminatory child welfare alone would indeed provide a monetary return services. on investment. The final rule also updates the definition of disability and other provisions to ensure Recommendation Made by NCD consistency with statutory amendments to the Concerning State Expansion of Oral Rehabilitation Act, enactment of the Americans Healthcare with Disabilities Act (ADA) and the Americans 7. States that do not provide preventive with Disabilities Act Amendments Act of 2008, Medicaid benefits for people with I/DD or the Affordable Care Act, as well as Supreme provide emergency benefits alone should Court and other significant court cases. It also make said benefits available. further clarifies the obligation to provide services State Expansion of Oral Healthcare in the most integrated setting. Development: Finally, the final rule makes other clarifying The state of Nevada is implementing a new edits, including updating outdated terminology Medicaid program whereby the state’s population and references. of people with I/DD will gain access to oral NCD’s research played a pivotal role in healthcare through state Medicaid initiatives. assisting HHS in developing this rule. NCD NCD is hopeful that more states will follow suit is confident that its and implement similar implementation and programs. enforcement will mark NCD’s research played a pivotal role significant headway in in assisting HHS in developing [the Including People achieving the promise of Section 504] rule. with Disabilities health equity for people in Clinical Trials with disabilities in the United States. In August 2024, NCD released a report on the exclusion of people with disabilities in clinical State Expansion of Oral Healthcare trials (CTs). Despite the size of the disability In 2023, NCD released its report titled community, people with disabilities are often Medicaid Oral Health Coverage for Adults with excluded in diversity and inclusion initiatives. Intellectual & Developmental Disabilities—A Multiple efforts in recent years have been made Fiscal Analysis.8 In it, NCD explored whether to enhance the diversity in CTs. However, increasing Medicaid coverage for people with I/ disability is not included as a dimension of DD would provide a return on investment vis-à- diversity in such efforts. Explicit exclusion of vis the money ultimately spent on preventable people with disabilities in CTs occurs primarily illness and in emergency rooms due to due to exclusions embedded in the study untreated dental problems. NCD’s findings show protocol. In the absence of overt statements that adding Medicaid preventive care benefits that allow accommodations for people with for people with I/DD in 11 of 12 states that disabilities to complete trial activities, availability 16 National Council on Disability of accommodations is left to the interpretation of The explicit requirements of CT inclusion in study teams. This often results in the exclusion of the amended Section 504 regulations as well as people who may need such support to adhere to FDA’s workshops are positive steps. However, the protocol. inclusion of people with disabilities in CTs will In recent years, federal agencies have require consistent Section 504 enforcement by made efforts to address the exclusionary HHS and the US Department of Justice (DOJ) to practices of CTs pertaining to people with ensure compliance. disabilities. For instance, HHS’s updated Section 504 regulations explicitly spell out Recommendations Made by NCD required inclusionary practices for any CTs Concerning Including People with receiving federal funds. In 2022, Congress Disabilities in CTs passed the Food and Drug Omnibus Reform 8. CT study teams should incorporate Act (FDORA) and one of the provisions is for overt explanations and justifications of the HHS to convene public workshops together and availability of reasonable accommodations consider input from stakeholders on promising in informed consent documents. These would practices to increase enrollment of historically include but not be limited to additional time, underrepresented populations in clinical caregiver support, and auditory presentation for studies. The US Food and Drug Administration participants with impaired consent capacity. (FDA) facilitated the workshops that discussed 9. FDA and NIH should develop guidance inclusion of individuals with disabilities including on eligibility parameters for investigators, intellectual or developmental and mental similar to FDA’s Guidance for Investigators on illness in CTs. Informed Consent. The guidance should do the following: Aim to reduce subjectivity in eligibility criteria to eliminate principal investigator bias and participant selection. Recent progress to address clinical trial exclusion Provide robust eligibility criteria for protocol teams to access when making decision- 2022 Food and Drug Omnibus Reform Act making capacity decisions. (FDORA) Broaden inclusion criteria to avoid FDA facilitated workshops discussing unnecessary exclusion. inclusion of people with disabilities in Recommend acceptable accommodations clinical trials be incorporated into inclusion criteria HHS Section 504 regulation spells out to reduce subjective assessment of a required inclusionary practices for any permissible accommodation. clinical trial receiving federal funds Recommend all exclusion criteria be scientifically justified. National Disability Policy: A Progress Report, 2024 17 Recommend inclusion of people with Including People with Disabilities in CT disabilities in patient advisory boards. Development: NCD will continue to monitor this issue and 10. HHS and DOJ should increase oversight call for the implementation of these recently and enforcement of Section 504 at healthcare provided recommendations. facilities to ensure that programs and services are accessible to people with disabilities. 18 National Council on Disability Section 2: Transportation N CD wholeheartedly supports the passing airports install or maintain at least one universal of the 2024 Federal Aviation Administration changing station in each terminal and requires (FAA) Reauthorization Act that includes clearly visible signage near the entrance to inform essential accessibility requirements for people. travelers of their locations. This allows people who These requirements encompass accommodating need this accommodation to travel with dignity, by seating requests based on disability-related needs, providing them with a safe, sanitary, and private establishing new training standards for airline place to take care of their personal needs. personnel who handle and store wheelchairs to The FAA awarded $103.2 million in federal prevent damage, and ensuring the availability of funding through the Airport Terminals Program universal changing stations in airports. NCD fully to improve ADA accessibility in multiple airports, supports as well other developments including the funded under the Infrastructure Law.9 It further regulatory actions taken by the US Department expanded compliance and enforcement of the of Transportation (DOT), guidelines provided by Air Carrier Access Act and is implementing the US Access Board, and ongoing accessibility regulations by hiring more attorneys and improvements made by Amtrak. analysts to investigate and process a backlog of complaints filed by people with disabilities.10 Recommendation by NCD Concerning In addition, it released travel tips for wheelchair Transportation users on its website in order to further educate 11. Expanded accessibility across all travel passengers with disabilities about sharing venues must be implemented. information about their wheelchairs and scooters Air Travel Developments: in advance of travel with airlines.11 The signing into law of the 2024 FAA DOT reached an agreement with United Reauthorization Act marked essential accessibility Airlines resulting from its investigation into requirements for people. These mandates include the death of a passenger with a disability. accommodating seating requests based on The agreement requires the airline to take disability-related needs, establishing new training several actions to ensure that wheelchair standards for airline personnel who handle users travel with safety and dignity, including and store wheelchairs to prevent damage, and posting the width of plane cargo doors online awarding grants for airport accessibility upgrades. so that customers can determine whether their The Act further mandates that all medium and large wheelchair will fit in a particular plane.12 National Disability Policy: A Progress Report, 2024 19 Further, DOT issued a final rule to amend November 1, 2023, through April 30, 2024), as of the DOT’s Air Carrier Access Act regulation close of April 2024, there are 385 stations where to improve the accessibility of lavatories on Amtrak has some type of ADA responsibility single-aisle aircraft. This final rule is intended to (e.g., station building, passenger platform, and/or ensure that the US air transportation system parking). Amtrak reports that its ADA responsibility is safe and accessible to individuals with has been addressed at 190 stations (123 stations disabilities.13 Additionally, DOT proposed a where Amtrak has met its ADA responsibility for rule to strengthen its some or all components regulations implementing This [Air Carrier Access Act] final and 67 stations where the Air Carrier Access rule is intended to ensure that the Amtrak has met its Act to address problems ADA responsibility US air transportation system is safe that individuals with with exception of the and accessible to individuals with disabilities using passenger platforms, wheelchairs and scooters disabilities. which will require confront when traveling additional work).15 by air that impact their dignity and safety, The Federal Highway Administration launched including mishandled wheelchairs and scooters a new ADA transition plan webpage to inform and improper transfers to and from aircraft seats, the public on the strides states have made in aisle chairs, and personal wheelchairs.14 addressing the pre-ADA legacy of inaccessible pedestrian facilities.16 Ground Travel Developments: Amtrak has continued to improve on its US Access Board Developments: accessibility to people with disabilities through The US Access Board issued a final rule, ongoing training of employees and increased “Accessibility Guidelines for Pedestrian Facilities physically accessible in the Public Right-of- stations and cars. Amtrak’s Americans with Disabilities Way,” providing minimum Amtrak’s Americans guidelines for all newly Act Stations Program (ADASP) is with Disabilities Act constructed pedestrian a multiyear program developed to Stations Program facilities and altered (ADASP) is a multiyear bring stations, or the components portions of existing program developed of stations that Amtrak has ADA pedestrian facilities for to bring stations, or responsibility for, into compliance pedestrian circulation and the components of with ADA requirements. use in the public right-of- stations that Amtrak way. These guidelines, has ADA responsibility for, into compliance once adopted, will serve as the technical basis of with ADA requirements. The ADASP is funded enforceable standards issued by the US General by the Infrastructure Investment and Jobs Services Administration under the Architectural Act. As reported by Amtrak under its US DOJ Barriers Act of 1968, as amended, and would Settlement Agreement (for the reporting period of ensure that facilities used by pedestrians 20 National Council on Disability that are subject to the Act, such as sidewalks The US General Services Administration and crosswalks constructed or altered in the issued a final rule amending the Federal public right-of-way by Federal, state, and local Management Regulation regarding real property governments using federal funds, are readily design and construction to adopt the new accessible to and usable by pedestrians with accessibility guidelines issued by the US Access disabilities. 17 Board.18 National Disability Policy: A Progress Report, 2024 21 22 National Council on Disability Section 3: Employment F air and reasonable employment policies are Since the publication of the strategic plan, of course essential to achieving economic the AbilityOne program issued a final rule on self-sufficiency for people with disabilities. July 21, 2022, which prohibits payments of This year NCD has primarily focused its subminimum wage on AbilityOne contracts. The consideration of disability policy within the scope AbilityOne Commission also has issued two of employment on two essential areas that no policy documents that focus on compliance. doubt deserve attention: the AbilityOne program The first, published January 1, 2024, is 51.400, and Tribal Lands Vocational Rehabilitation. “AbilityOne Commission Compliance Program” that sets forth the compliance approach of the Recommendation by NCD Concerning Commission for AbilityOne nonprofit agencies. the AbilityOne Program The policy document articulates the oversight 12. There should be a phaseout of the obligations of the central nonprofit agencies AbilityOne program, to be replaced by toward the nonprofit agencies and strengthens amending Section 503 of the Rehabilitation the oversight of the AbilityOne Commission Act that would require federal contractors over the central nonprofit agencies’ compliance employ a percentage of people with activities. The second policy document, 51.403, significant disabilities and who are blind. published January 1, 2024, “Determining AbilityOne Developments: Eligibility of Participating Employees,” sets forth The AbilityOne Commission published its FY the requirements that a nonprofit agency must 2022–2026 strategic plan in June 2022. The meet to count AbilityOne employees toward strategic plan laid out four strategic objectives. the direct labor ratio hour required in the Javits- The objectives include focusing on transforming Wagner-O’Day Act and the documentation the program to increase competitive, integrated requirements and recordkeeping responsibilities employment; identifying, publicizing, and of a nonprofit agency. Both 51.400 and 51.403 are increasing good jobs and optimal jobs within in line with NCD’s interim recommendation from the program; ensuring effective governance the 2020 publication, “Policies from the Past in a and results across the program; and engaging Modern Era: The Unintended Consequences of in partnerships to increase employment for the AbilityOne Program and Section 14(c).”19 AbilityOne employees within and above the Additionally, on March 21, 2023, the program. AbilityOne Commission promulgated a final National Disability Policy: A Progress Report, 2024 23 rule, “Supporting Competition in the AbilityOne than the federal minimum wage) to nonprofit Program,” which introduces limited competition agencies that work on AbilityOne contracts. into the AbilityOne Commission. This final rule Issuance of Section 14(c) certificates should considers price and nonprice factors in high be phased out over time. dollar value service contracts. The introduction DOL Development: of competition into the AbilityOne program was As reported by DOL to congressional authorizing a recommendation from the Section 898 “Panel and appropriations committees, as of October on Department of Defense and AbilityOne 2023, 781 employers held issued 14(c) Contracting Oversight, Accountability, and certificates, who reported paying 42,134 workers Integrity” created by the 2017 NDAA.20 at subminimum wages in their previously The promulgation of these AbilityOne policy completed fiscal quarter; and there were 65 documents aligns with some of NCD’s interim employers with a pending certificate application.21 recommendations from our 2020 report, “Policies This number is significantly down from the from the Past in a Modern Era: The Unintended 420,000 people earning subminimum wages Consequences of the AbilityOne Program and under the 14(c) program in 2012 as indicated at Section 14(c).” However, NCD made clear in the that time by NCD in a report that recommended report that the interim recommendations were a phaseout of the 14(c) program.22 This downward only contextually appropriate during the phaseout trend is concurrent with a greater emphasis on of the AbilityOne program, and implementation competitive, integrated employment since the of any NCD interim recommendations does passage of the 2014 Workforce Innovation and not negate our recommendation to phase out Opportunity Act. the AbilityOne program. Recent updates to In the Spring 2024 Unified Agenda of the AbilityOne program do not address the Regulatory and Deregulatory Actions for the DOL, underlying structural problems and incompatibility DOL proposed a rule whereby it is conducting a of the AbilityOne program with modern disability regulatory review and is considering input from policy. Therefore, NCD continues to recommend stakeholders to determine appropriate regulatory a phaseout of the AbilityOne program to be actions regarding “Employment of Workers with replaced by amending Section 503 of the Disabilities Under Section 14(c) of the Fair Labor Rehabilitation Act that would require federal Standards Act.”23 contractors employ a percentage of people with significant disabilities and who are blind. Recommendation by NCD Moving Forward Concerning Tribal Land Recommendation by NCD Concerning Vocational Rehabilitation Developments the US Department of Labor and 14. The Federal Government should address Section 14(c) Certificates the disparity in federal programs and services 13. The US Department of Labor (DOL) should for American Indians residing on tribal restrict the issuance of Fair Labor Standards lands. Concerning tribal land vocational Act Section 14(c) certificates (which allows rehabilitation, NCD has elected to publish businesses to pay people with disabilities less a report in the coming year with relevant 24 National Council on Disability recommendations that will review an NCD are not guaranteed funding during the next 2003 report and compare findings and funding cycle, thus creating a lack of continuity uncover new disparities via talking circles in VR services to its tribal members. Tribes that with tribal citizens. have never had VR funding could be awarded a grant for the first time which presents startup Tribal Lands Vocational Rehabilitation and capacity building challenges. The way VR Developments funds are allotted creates additional barriers for In 2023, in coordination with the National Indian tribes who are attempting to provide a much- Council on Aging, NCD’s American Indian and needed service. Alaskan Native toolkit, developed many years The Council of State Administrators of ago, was updated.24 This toolkit addresses the Vocational Rehabilitation (CSAVR) collaborates issue of the disparate with a variety of partners treatment between [The NCD American Indian and and stakeholders in funding for vocational Alaskan Native] toolkit addresses VR. The Consortia of rehabilitation (VR) Administrators for Native the issue of the disparate treatment programs for states and American Rehabilitation between funding for vocational territories versus tribal (CANAR) is a key lands and the persistent rehabilitation (VR) programs for partner in public VR challenges that disparity states and territories versus tribal and the 81 programs creates. Tribal Vocational lands and the persistent challenges that provide vocational Rehabilitation Programs rehabilitation services to that disparity creates. and American Indian Native Americans and tribes located on federal and state reservations Alaskan Natives, which are funded under the are not eligible for the guaranteed annual funding Rehabilitation Act. that is provided to each state and territory. NCD is finalizing a report on the experiences Funding for American Indian VR is through of people with disabilities living on tribal lands. an American Indian Vocational Rehabilitation The report will address the disparity in federal Services discretionary grant and is a competitive programs and services for American Indians bid process; the grant provides funding for five residing on tribal lands. This report will review years. The estimated average size of awards is NCD’s 2003 report25 and compare findings and approximately $531,000. Not all tribes have a VR uncover new disparities via talking circles with program, and tribes with an existing VR program tribal citizens. National Disability Policy: A Progress Report, 2024 25 26 National Council on Disability Section 4: Housing After Disasters U ndoubtedly, accessible homes are a change helps survivors with disabilities improve critical issue for many people with their living conditions by making their homes disabilities. This even more accessible is a policy area that Survivors with disabilities can than they were before intersects with disasters now use Federal Emergency disaster. Previously, and how a person with FEMA could only help Management Agency (FEMA) a disability might move with accessibility items funding to make certain accessibility forward in tending directly damaged by the to their accessibility improvements to homes damaged disaster or that were needs following a by a declared disaster,... making not present before the disaster. Accordingly, their homes even more accessible disaster but are required developments concerning due to a disaster-caused than they were before disaster. the intersectionality disability. of these policy areas is something NCD has FEMA’s interim final rule (IFR), which applies monitored. to emergencies and major disasters declared Housing After Disaster Developments: on or after March 22, 2024, provides FEMA Survivors with funding for accessibility disabilities can now FEMA’s interim final rule (IFR), improvements to use Federal Emergency which applies to emergencies homes damaged by a Management Agency and major disasters declared on declared disaster. The (FEMA) funding to make new regulations provide or after March 22, 2024, provides certain accessibility funding for accessibility improvements to FEMA funding for accessibility features regardless homes damaged by a improvements to homes damaged of when or how the declared disaster. This by a declared disaster. disability was acquired. National Disability Policy: A Progress Report, 2024 27 28 National Council on Disability Section 5: Counting the Disability Population US Census with disabilities, including HHS’s National Institute on Disability, Independent Living, The Census Bureau issued a notice informing and Rehabilitation Research, and the broader the public that it planned to change the yes/no stakeholder community. The Census Bureau disability questions that should maintain the are currently used in the US Census (American The Census Bureau... planned then current questions to change the yes/no disability in the ACS until a Community Survey [ACS] set of questions is questions) to questions questions that are currently used developed that can that would be used in a in the US Census... to questions most accurately count manner that would cut that would... cut the estimated people with disabilities the estimated population of people with disabilities population of people with disabilities in the United States. from 13.9 percent to 8.1 percent. Going forward, the from 13.9 percent to 8.1 Census Bureau should percent, with no clear include all relevant information related to explanation for why, and without input from its proposed actions in its Federal Register disability stakeholders during the process of notices so individuals can provide informed decision-making. comments, and the Census Bureau should post Recommendation public comments as Made by NCD they are submitted to In February 2024, the Census Concerning the US increase transparency Census Bureau announced that it would and encourage 15. The Census Bureau not implement these changes in the engaged, meaningful should fully engage the 2025 ACS... participation from the disability community public. and continue to work toward finding a manner US Census Developments: to better count the disability population in the In February 2024, the Census Bureau announced United States. This should include the active that it would not implement these changes in input of those with expertise in the field of the 2025 ACS and would engage with disability disability, including researchers, and offices stakeholders to help determine how it will move within federal agencies that focus on people forward. National Disability Policy: A Progress Report, 2024 29 30 National Council on Disability Section 6: Technology A s technologies advance, and the use of establishes specific requirements, including the web and mobile applications becomes adoption of technical standards to ensure that increasingly more paramount in people’s the services, programs, and activities offered daily lives, it is vital that those web and mobile by state and local government entities through applications be accessible in compliance with web and mobile applications are accessible to disability rights laws. Digital access is not an the public. People with disabilities, including area that people with people who are blind, disabilities can afford to deaf, and hard of The final [DOJ ADA Title II] rule be excluded from. hearing, and people with establishes specific requirements, other disabilities, face including the adoption of difficulties accessing Recommendation by NCD Moving technical standards to ensure public programs and Forward Concerning that the services, programs, and services, including Digital Access emergency information, activities offered by state and Regulation courts, healthcare local government entities through 16. DOJ should providers, schools, ensure focused web and mobile applications are voting information, implementation and accessible to the public. parking, permit robust monitoring applications, tax and enforcement of its final rule concerning payments, and transit updates. In the absence the accessibility of services, programs, of these technologies being accessible, it and activities offered by state and local can be challenging or impossible for people government entities through web and mobile with disabilities to access critical services. As applications. a result, individuals with disabilities may be Digital Access Developments: excluded from accessing public services that DOJ issued its final rule revising the regulation other people use with ease. NCD welcomes this implementing Title II of the ADA. The rule positive step forward by DOJ. National Disability Policy: A Progress Report, 2024 31 32 National Council on Disability Section 7: Other Issues to Watch Tax Code ineligible for unemployment benefits when the workshop closed due to the COVID-19 pandemic. NCD continues to engage in ongoing discussions NCD immediately started researching whether with the Internal Revenue Service to advocate this was an isolated incident or a systemic for a review and update of the current tax problem. Through this research, NCD identified an code and policies. Our goal is to ensure a fair outdated Revenue Ruling from 1965 specific to tax system that is inclusive of individuals with sheltered workshops that may be inappropriately disabilities. The impetus for these meetings applied in order to classify people with disabilities began during the COVID-19 pandemic in late as either rehabilitation clients or independent 2020 when many businesses were forced to shut contractors, and not employees. Consequently, down, and employees were required to stay at this keeps putative employees off employers’ home. Attorneys for a blind employee contacted payroll. While the woman and her attorneys NCD about a Louisiana unemployment appeal thought she was an employee, the Louisiana determination that ultimately concluded that a Workforce Commission concluded that she was a blind woman in the sheltered workshop was not rehabilitation client for unemployment purposes. an employee but rather a rehabilitation client. NCD continues to research this topic for an For this reason, despite working at the facility anticipated report on the topic in the near term. just like any other employee for years, she was National Disability Policy: A Progress Report, 2024 33 34 National Council on Disability Section 8: Conclusion T he collective efforts of the Executive significant progress in areas like healthcare and Legislative branches are essential and transportation, it is crucial to acknowledge to advancing policy that supports the that many challenges persist for those whose goals of the ADA: equality of opportunity, primary struggles remain unaddressed. In the economic self-sufficiency, independent living, coming years, it is imperative to rectify these and full participation of people with disabilities policy shortcomings and continue building on the in all aspects of society, regardless of type or positive strides made in the fight for disability severity of disability. While the past year marked rights. National Disability Policy: A Progress Report, 2024 35 36 National Council on Disability Endnotes 1 V. L. Forman-Hoffman, K. L. Ault, W. L. Anderson, J. M. Weiner, A. Stevens, V. A. Campbell, and B. S. Armour, “Disability Status, Mortality, and Leading Causes of Death in the United States Community Population,” Medical Care 53, no. 4 (2015): 346–54. https://pubmed.ncbi.nlm.nih.gov/25719432/. 2 M. Williams, J. Campbell, Y. Zhang, W. Felty, A. Harnden, E. Bannister, and V. Williams, “Exploring Health Disparities among Individuals with Disabilities within the United States,” paper presented at the American Public Health Association Annual Meeting and Expo (virtual), October 24–28, 2020. https://apha.confex.com/ apha/2020/meetingapp.cgi/Paper/473208. 3 E. Mahmoudi and M. A. Meade, “Disparities in Access to Healthcare among Adults with Physical Disabilities: Analysis of a Representative National Sample for a Ten-Year Period,” Disability and Health Journal 8, no. 2 (2015): 182–90. https://doi.org/10.1016/j.dhjo.2014.08.007. 4 National Institutes of Health, “NIH Designates People with Disabilities as a Population with Health Disparities,” NIH Record, LXXV, no. 21 (2023). https://nihrecord.nih.gov/2023/10/13/nih-designates-people-disabilities -population-health-disparities#:~:text=Eliseo%20P%C3%A9rez%2DStable%2C%20director%20of,for%20 research%20supported%20by%20NIH. 5 Surveying the Landscape of Disability Data and Statistics: A Toolkit for Interagency Collaboration (Interagency Committee on Disability Research, 2024). https://pstrapiubntstorage.blob.core.windows.net/strapib/assets/ ICDR_Disab_Data_Stats_Toolkit_03_25_24_REV_3_Combined_508_6cf0431310.pdf. 6 Enforceable Accessible Medical Equipment Standards: A Necessary Means to Address the Health Care Needs of People with Mobility Disabilities (National Council on Disability, 2021). 7 US Department of Health and Human Services, “Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance,” Federal Register 89, no. 91 (2024, May 9): 40066. https:// public-inspection.federalregister.gov/2024-09237.pdf. 8 Medicaid Oral Health Coverage for Adults with Intellectual & Developmental Disabilities—A Fiscal Analysis (National Council on Disability, 2023). 9 Federal Aviation Administration, Bipartisan Infrastructure Law Airport Terminal Program Grants file, https:// www.faa.gov/sites/faa.gov/files/2024-02/FY2024_ATP_Approved_Selections_rev.pdf. Amount reflects all projects listed in the “FY2024 Airport Terminal Program Selections” that identify ADA improvements as a goal. 10 Presentation made to NCD by Kelly Buckland of the US Department of Transportation, February 8, 2024. 11 “Wheelchairs and Other Assistive Devices,” US Department of Transportation, Aviation Consumer Protection, updated December 11, 2023, https://www.transportation.gov/individuals/aviation-consumer-protection/ wheelchairs-and-other-assistive-devices. 12 “Agreement Between U.S. Department of Transportation and United Airlines,” US Department of Transportation, updated September 28, 2023, https://www.transportation.gov/airconsumer/DOT-United -Airlines-Agreement-Improve-Wheelchair-Access-Word. 13 US Department of Transportation, “Accessible Lavatories on Single-Aisle Aircraft,” Federal Register 88, no. 146 (2023, August 1): 50020. https://www.federalregister.gov/documents/2023/08/01/2023-16178/ accessible-lavatories-on-single-aisle-aircraft. 14 US Department of Transportation, “Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs,” Federal Register 89, no. 49 (2024, March 12): 17766. https://www.federalregister.gov/ documents/2024/03/12/2024-04729/ensuring-safe-accommodations-for-air-travelers-with-disabilities-using -wheelchairs. National Disability Policy: A Progress Report, 2024 37 15 Amtrak, Americans with Disabilities Act Progress Report (2024, June). https://www.amtrak.com/content/dam/ projects/dotcom/english/public/documents/corporate/foia/amtrak-ada-progress-report-june-2024.pdf. 16 “ADA Transition Plan and Inventory Map,” Federal Highway Administration, updated February 16, 2024. https:// highways.dot.gov/civil-rights/programs/ada/ada-transition-plan-and-inventory-map. 17 “U.S. Access Board Issues Final Rule on Public Right-of-Way Accessibility Guidelines,” US Access Board, August 8, 2023. https://www.access-board.gov/news/2023/08/08/u-s-access-board-issues-final-rule-on-public -right-of-way-accessibility-guidelines/. 18 General Services Administration, “Federal Management Regulation; Accessibility Standard for Pedestrian Facilities in the Public Right-of-Way,” Federal Register 89, no. 128 (2024, July 3): 55072. https://www.federalregister.gov/documents/2024/07/03/2024-14424/federal-management-regulation-accessibility-standard -for-pedestrian-facilities-in-the-public. 19 Policies from the Past in a Modern Era: The Unintended Consequences of the AbilityOne Program & Section 14(c) (National Council on Disability, 2020). 20 Panel on Department of Defense and AbilityOne Contracting Oversight, Accountability, and Integrity Third Annual Report to Congress, https://www.acq.osd.mil/asda/dpc/cp/policy/docs/a1/3%20-%20Third%20Annual%20 Sec%20898%20Panel%20RTC%20(Jan%202021).pdf, pp. 14, 33; Panel on Department of Defense and AbilityOne Contracting Oversight, Accountability, and Integrity Fourth and Final Annual Report to Congress, https://www.acq.osd.mil/asda/dpc/cp/policy/docs/a1/USA002292-21-Report-w-Appendix.pdf, pp. 20, 29. 21 Annual Report to Authorizing and Appropriations Committees on the U.S. Department of Labor’s Wage and Hour Division Section 14(c) Program (US Department of Labor, 2023). https://www.dol.gov/sites/dolgov/files/ WHD/14c/WHD_FY23_Annual_14(c)_Report_to_Congress.pdf. 22 Subminimum Wage and Supported Employment (National Council on Disability, 2012). 23 Spring 2024 Unified Agenda of Regulatory and Deregulatory Actions (US Department of Labor, 2024). https:// www.reginfo.gov/public/do/eAgendaViewRule?pubId=202404&RIN=1235-AA14. 24 Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide (National Council on Disability, 2023). 25 People with Disabilities on Tribal Lands: Education, Health Care, Vocational Rehabilitation, and Independent Living (National Council on Disability, 2003). 38 National Council on Disability National Council on Disability 1331 F Street, NW, Suite 850 Washington, DC 20004

National Disability Policy: A Progress Report 2024 PDF

Document Details

Tags

Related

Summary

Full Transcript