October 8, 2021
via electronic submission to http://www.regulations.gov/commenton/CMS-2021-0148-0001
The Honorable Shalanda Young
Acting Director
Office of Management and Budget
Office of Information and Regulatory Affairs
Washington, DC
The Honorable Chiquita Brooks-LaSure
Administrator
Centers for Medicare and Medicaid Services
7500 Security Boulevard
Baltimore, MD 21244-1850
RE: Proposed Review Choice Demonstration for Inpatient Rehabilitation Facility Services; CMS-10765
Dear Acting Director Young and Administrator Brooks-LaSure:
Disability Rights Education and Defense Fund (DREDF) appreciates the opportunity to comment on the proposed Review Choice Demonstration (RCD) for Inpatient Rehabilitation Facility (IRF) Services as we are deeply concerned about its potential for undercutting our long-standing priority of ensuring that people with disabilities can live productively and independently in their communities. President Biden’s administration has embraced these priorities by taking such actions as strengthening Medicaid home and community based services (HCBS) in the American Rescue Plan,[1] prominently featuring structural HCBS improvements in the Better Care Better Jobs Act[2] and in ongoing “Build Back Better” proposals,[3] and extending the Money Follows the Person program for another three years and easing eligibility requirements for the program.[4] But in addition to HCBS, individuals with disabilities must have timely access to appropriate, affordable healthcare, including critical rehabilitation and habilitation services, to maintain and maximize their functional capacity and health.
DREDF is a national cross-disability law and policy center that protects and advances the civil and human rights of people with disabilities through legal advocacy, training, education, and development of legislation and public policy. We are committed to increasing accessible and equally effective healthcare for people with disabilities and eliminating persistent health disparities that affect the length and quality of their lives. DREDF’s work is based on the knowledge that people with disabilities of varying racial and ethnic backgrounds, ages, genders, and sexual orientations are fully capable of achieving self-sufficiency and contributing to their communities with access to needed services and supports and the reasonable accommodations and modifications enshrined in U.S. law. Based in Berkeley, California, DREDF also works actively in California’s legislation, policies, and implementation of national programs because we recognize how the state’s population size and diversity can help shape national policies and trends.
Context
DREDF became aware of the IRF RCD through our membership in the Consortium of Citizens with Disabilities and the Coalition to Preserve Rehabilitation. We support the detailed letters that both of those groups have submitted opposing the RCD. However, we are compelled to also submit our own letter because of our deep concern that the new 100% auditing program that will be initiated will act as a gatekeeping mechanism to needed inpatient rehabilitation facilities throughout California as well as the other states where the RCD will eventually be implemented. We also remain unclear about the evidence that lies behind CMS’s claims of fraud concerning IRF referrals and services, particularly in reference to people with existing disabilities.
People with Disabilities as a Population Subject to Heath Inequities
A growing accumulation of data and research demonstrates that people with disabilities are subject to health and healthcare disparities, not because that is the inherent fate of anyone with a disability, but because people with a wide variety of disabilities encounter multiple systemic barriers that limit their access to social determinants of health as well as adequate healthcare services and supports.[5] Consequently people with disabilities fit squarely among the underserved populations that President Biden explicitly recognized in an Executive Order[6] that emphasized achieving the equitable delivery of government benefits and opportunities. Moreover, people with disabilities bear a unique and particular risk of being segregated and institutionalized just to get healthcare services that they need. This remains the case despite the Supreme Court’s determination over two decades ago that the unjustified isolation of people with disabilities constitutes discrimination.[7]
President Biden’s Executive Order recognized the need to address health disparities that were on full display during the COVID-19 pandemic as racial/ethnic health disparities translated into higher case and death rates and lower vaccination rates. People with disabilities were similarly at higher risk from the coronavirus and this was most evident in the horrific infection and death rates that occurred in nursing homes, as reported in by the Centers for Disease Control (CDC): over 702,000 confirmed cases and over 137,000 deaths among residents as of September 26, 2021.[8] For greater context, the great majority of people with disabilities and older persons live in the community. The nursing home infections and deaths occurred among a small subgroup of the population only 1.29 million persons who lived in certified nursing facilities as of 2020.[9]
Implicit Bias and Lack of Access to IRFs
One of the most prominent barriers to healthcare experienced by people with disabilities is implicit bias among healthcare providers. A study of physician attitudes toward people with disabilities, released in early 2021, captured the pre-pandemic views of over 700 U.S. physicians in active practice across the country.[10] Over 82 percent self-reported the belief that people with significant disabilities have a worse quality of life than non-disabled people. The study’s authors make the point that it would be difficult to imagine four out of five physicians freely stating that Black people have a worse quality of life than white people, or that LGBTQ+ individuals have a worse quality of life. Some healthcare providers might feel that Black people, for example, face significant challenges in their life from external factors such as white supremacy and police violence that negatively impact their quality of life, and people with disabilities face difficulties when they seek needed healthcare that similarly lead them to the assumption that disabled people have a worse quality of life. However, only about 18 percent of this same group “strongly agreed that the health care system often treats [disabled] patients unfairly.”[11] Taking these two findings together leads to the conclusion that physicians base the perceived lack of quality of life for people with disabilities on the fact of the disability, not in how people with disabilities are treated when they seek healthcare. At the same time, “only 40.7% of physicians were very confident about their ability to provide the same quality of care to patients with disability”[12] and “just 56.5% strongly agreed that they welcomed patients with disability into their practices.”[13] The difference between these two findings results in 16% of surveyed doctors who welcome patients with disabilities even though they are not very confident that they can provide those patients with the same quality of care that they give to non-disabled patients. This discrepancy leads to an inference that at least some physicians locate the problem of providing quality care in the patient with a disability, not issues that are based in external factors such as incomplete medical education, physical barriers, lack of modifications, or in implicit biases that can be unearthed and eliminated.
Implicit bias among healthcare providers disadvantages people with disabilities not only in urgent care situations, but also in rehabilitative care situations. My colleague, Ingrid Tischer, DREDF’s Director of Development, experienced this personally. Ms. Tischer has muscular dystrophy and sought care from a hospital after a fall in her home during early 2021. She was diagnosed with pneumonia, and while her immediate physical needs were addressed during the first part of her hospital stay, Ms. Tischer wondered about what would happen after her impending discharge since she had lost considerable functional capacity after her fall and while she was in the hospital. She knew of a special in-patient rehabilitation program in the area, but was informed by the hospital’s neurologist that they don’t usually take patients with progressive conditions such as her own. When she sought greater understanding of why she did not qualify for inpatient rehabilitation, the neurologist said everything was documented in Ms. Tischer’s chart and physically gestured to Ms. Tischer’s body as she lay vulnerable in the hospital bed, suffering from pneumonia, wearing an oxygen mask, and in acute emotional distress. “Well, look at you. You’ve always known this was coming.” The neurologist continued with “This has been coming for a long time. And you know, there’s nothing we can really do about it.” Ms. Tischer’s experience in the hospital is documented in a verbal interview with a reporter that has also been transcribed.[14] She never received inpatient rehabilitative care but with knowledgeable support from colleagues and friends with disabilities who helped ensure a successful discharge and exercise regimen, Ms. Tischer’s condition has greatly improved and she is currently back at work.
My colleague was terrified during her stay, but she had the benefit of being well-versed in disability rights, and having friends and family who were fully conversant with the rich full lives that people with disabilities and chronic conditions live, and experienced in the range of home and community-based services and supports that were available to her. What happens to people who have chronic or progressive conditions who don’t consider themselves part of the disability community or have not previously lived with functional impairments? What is the capacity of those individuals, particularly low-income persons of color who have never had a regular or trusted source of medical care after they experience a medical event and IRF care is denied or never even offered? How do they, or their families, argue against a neurologist’s assessment or know to argue for a physiatrist or other rehabilitation specialist’s disability-informed assessment, when they are told that rehabilitation will not accomplish desired goals and they should either just return home or go to a nursing facility? When 100% of an entity’s IRF referrals will be reviewed for medical necessity, it is far easier for providers to make referrals only for those patients where full or significant recovery is expected, patients who have a high level of baseline health already, who do not have pre-existing medical conditions, and who have diagnoses that are commonly followed by IRF referrals. If Medicare contractors are told to review IRF referrals for medical necessity, it is easy to see them questioning IRF referrals for patients who had functional limitations before they ever reached the hospital, living with functional limitations that are anticipated to worsen over time, even if not imminently. What provider could be expected or eager to justify referring a patient that could medically benefit from the multidisciplinary team and care coordination that is uniquely available in an IRF, but who has an idiomatic health condition that makes it impossible to provide evidence of how much improvement is expected or how much quality of life will be lost if an IRF referral is denied? There is already so much implicit bias against persons with significant disabilities in the healthcare system. DREDF deeply fears that the reviewing Medicare contractors who are free to second guess the medical necessity judgements of experienced rehabilitation specialists will decide that persons who are already disabled have a poor quality of life that will not be improved by an expensive stay in a IRF, a stay which will not “cure” the patient or lead to full recovery, but “only” slow the functional loss that is already expected.
The RCD on IRF is being introduced because of a stated concern with medical fraud. The implication is that there is already too much unjustified use of IRFs. But from DREDF’s point of view, we see insufficient recognition of the medical need and benefit that people with significant disabilities can obtain from appropriate and timely referrals to IRFs. The RCD as introduced and designed is intended entirely to reduce what are considered unjustified IRF referrals, but by their operation, they will inevitably and simultaneously further reduce needed IRF referrals for people with disabilities, and particularly low-income people with disabilities of color. For this latter group, who disproportionately have crowded living situations where rooms are shared with multiple generations of family or where there is little physical space for home visits from therapists, there will be no option for home rehabilitation visits, and little option for inexpensive accessible transportation to get to out-patient rehabilitation centers. Where an existing home cannot be sufficiently or quickly retrofitted for a patient’s new accessibility needs, a “temporary” nursing home stay may be the only option, but it is one that offers few or no rehabilitation or therapeutic services, and one that all too often turns into permanent or semi-permanent residence.
Mitigating Unintended Consequences in the RCD
DREDF strongly objects to the risks of unintended consequences from the RCD that will be borne by people with disabilities, in complete opposition to the Biden administration’s emphasis on ensuring that people with disabilities receive and benefit from home and community-based care, and be equitably included in all government benefits, including healthcare benefits. At a minimum, a rollout of the RCD should be accompanied by strong guardrails that emphasize the need for independent tracking of the short and longer-term health outcomes of those patients whose IRF claims were denied, and those who received IRF admissions. In other words, the RCD must produce transparent data that allows for analysis not only of cost savings, but allows for close examination of patient outcomes with granular information about the kinds of health events, health conditions and diagnoses, functional impairment levels, and race/ethnicity of the individuals whose records are reviewed. The Medicare contractors who perform the reviews must also be trained in disability implicit bias and the medical, social, and cultural factors that an experienced rehabilitation specialist may consider when admitting a patient for inpatient rehabilitation. And there must be ongoing tracking of the overall referral patterns that are made to IRFs over the entire course of the RCD, so that Medicare, advocates, and the disability community can have some early understanding of the ways in which the RCD may negatively affect the rehabilitation needs of people with significant disabilities. Without these guardrails, the RCD will result in lost years and lives for people with disabilities, and a direct denial of the disability policy priorities embraced by the Biden administration
Sincerely,
Silvia Yee
Senior Staff Attorney
[1] Pub. L. 117-2, 117th Congress, 9817.
[3] Lindsay Copeland, “Build Back Better” Key Health Provisions Begin to Take Shape, Medicare Watch, September 23, 2021.
[4] Consolidated Appropriations Act of 2021, Pub. L. 116-260, 116th Congress.
[5] G.L. Krahn, D.K. Walker, and R. Correa-De-Araujo, Persons with Disabilities as an Unrecognized Health Disparity Population, American Journal of Public Health 105 S2 (2015): S198-S206; S. Yee, ML Breslin, et al., Compounded Disparities: Health Equity at the Intersection of Disability, Race, and Ethnicity, Nat’l Acads. Sci., Eng’g, & Med. (2017); Andrs J. Gallegos, Misperceptions of People with Disabilities Lead to Low-Quality Care: How Policy Makers Can Counter the Harm and Injustice, Health Affairs (April 2021).
[6] Executive Order 13985 Advancing Racial Equity and Support for Underserved Communities Through the Federal Government (January 20, 2021).
[7] Olmstead v. L.C., 527 U.S. 581 (1999).
[8] CDC, COVID-19 Nursing Home Data (last updated October 7, 2021).
[9] Kaiser Family Foundations, Total Number of Residents in Certified Nursing Homes (2020)
[10] Lisa I. Iezzoni et al., Physicians’ Perceptions of People with Disability And Their Health Care, Health Affairs 40, no. 2,(February 2021): 297-306.
[11] Lisa I. Iezzoni et al., “Physicians’ Perceptions of People with Disability.
[12] Lisa I. Iezzoni et al., “Physicians’ Perceptions of People with Disability.
[13] Lisa I. Iezzoni et al., “Physicians’ Perceptions of People with Disability.
[14] Christopher Egusa, ‘Not Worth The Resources’: How The Pandemic Revealed Existing Biases Against The Disability Community, KALW (September 7, 2021).