Disability Rights Education & Defense Fund, Bazelon Center for Mental Health Law Issue Public Comment on Centers for Medicare & Medicaid Services Proposed Rule
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To:
Dr.
Re: RIN 0938-AU65; CMS-9911-P
Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2023
Dear Administrator Brooks-LaSure and Director Montz:
I. Introduction
Our comments on the provisions of the NBPP 2023 Rule do not cover the full range of topics raised in the rule but are intended to address key areas of particular importance to people with disabilities. We especially want to highlight the nondiscriminatory benefit design proposals--including the sexual orientation and gender identity non-discrimination sections and presumptively discriminatory examples of benefit design below. DREDF and Bazelon have long called for more regulatory guidance and policy on the multiple forms of discriminatory benefit design prohibited by the Affordable
Care Act (ACA) in light of the limited recourse that US courts have historically given plaintiffs with disabilities when health insurance coverage fails to include medically necessary services and treatments. We similarly draw attention to the ways in which Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex (LGBTQI+) individuals with disabilities are highly vulnerable when they experience healthcare discrimination because of their sexual orientation or gender identity.
DREDF and Bazelon strongly supports many changes and additions proposed in the 2023 NBPP Rule to support people with disabilities--including those with mental disabilities, multiple disabilities, and inter-sectional identities--so that they may attain equal access to effective and affordable health insurance for the healthcare services they need to live full and productive lives in the community.
II. Nondiscrimination on the Basis of Sexual Orientation and Gender Identity (Part 147) (Sec.Sec. 147.104(e), 155.120(c), 155.220(j), 156.125(b), 156.200(e), and 156.1230(b)).
DREDF and Bazelon strongly support the proposed rule's provisions on prohibiting discrimination based on sexual orientation and gender identity among health exchanges, insurers, agents and brokers. An analysis of a 2017 national survey of Discrimination in
Transgender persons with disabilities bear a compounded burden from discrimination as documented in DREDF's research on Health Disparities at the Intersection of Disability and Gender Identity, which highlight how the largest survey of transgender persons in the US to date found that"39% of the nearly 28,000 transgender respondents had one or multiple disabilities, as compared with 15% of the general population." In another article exploring The Intersection Between Disability and LGBT Discrimination and Marginalization, the author note show reported barriers in healthcare to LGBTQ people are particularly concerning because "people with disabilities likely need healthcare more than others," and also because of the greater incidence of reported disability among the LGBTQ population. Further, the "prevalence of mental health disabilities in the LGBTQ+ community makes the community particularly vulnerable to harmful mental health policy proposals." LGBTQ adults are twice as likely to experience mental illness and 2.5 times more likely to experience depression and anxiety./1
Individuals
HHS' current limited recognition of healthcare discrimination on the basis of sexual orientation and gender identity has consigned LGBTQ persons with disabilities to receiving "second best" medical care by leaving them with few tools to address the longstanding and multiple barriers to achieving and maintaining good health. When insurers use transgender-specific exclusions to deny coverage for medically necessary treatment, including but not limited to gender-affirming treatment, or fail to support the rights of same-sex couples to receive reproductive counselling and services, they add to the burden of discrimination, stigma, and trauma endured by LGBTQ persons with disabilities. This proposed rule is a vital first step towards eliminating this life-threatening form of discrimination.
The proposed amendment is also within HHS' authority and furthers the ACA's clear intent of improving access to health coverage and medically necessary services, treatments, and devices. Provisions of the ACA indicate
1 https://www.samhsa.gov/data/sites/default/files/NSDUH-SexualOrientation-2015/NSDUH-SexualOrientation-2015/NSDUH-SexualOrientation-2015.htm; https://www.psychiatry.org/psychiatrists/cultural-competency/education/lgbtq-patientshttps://pdas.samhsa.gov/#/survey/N-MHSS-2019-DS0001
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III. Federally Certified Risk Adjustment Methodology (Sec. 153.320)
The proposed rule would make several changes to the individual and small group market risk adjustment program. One of those proposed changes is to adopt a "two-stage" method for estimating the parameters of CMS' risk score models. CMS indicates that the intended effect of this change is to reduce how much insurers that attract lower-risk enrollees pay into risk adjustment (which, in turn, would reduce how much insurers that attract higher-risk enrollees receive from risk adjustment).
Because higher-risk enrollees are more likely to select higher-quality plans (e.g., plans with broader provider networks, larger formularies, or less onerous utilization controls), we are concerned that this proposal would increase the premiums of higher-quality plans. This would make it harder for consumers to afford these plans and increase premium burdens for consumers with greater health care needs.
We are also concerned that this proposal would create incentives for insurers to reduce the quality of the coverage they offer, both in general and for high-risk enrollees in particular. Those types of insurer responses would exacerbate the problems that the stronger network adequacy and nondiscrimination standards that are also included in the proposed rule aim to address. We are not in favor of this proposal.
IV. Ability of States to Permit Agents and Brokers and Web-Brokers to Assist Qualified Individuals, Qualified Employers or Qualified Employees Enrolling in QHPs (Sec. 155.220)
We also support the proposal to expand the types of entities
Currently, web brokers in the federally-facilitated marketplace (FFM) are required to display all plans available to a consumer in their rating area. Web brokers display the plans they support enrollment in--generally, those that pay commissions - but display only the insurer, plan name and type, and metal tier for those they do not sell, along with a disclaimer that more information can be found at HealthCare.gov. The lack of additional comparative information, such as the premium and deductible, hinders consumers' ability to make meaningful comparisons between plans. The proposed rule specifies additional plan elements that must be displayed when a web broker facilitates enrollment in a plan and, for web brokers that do not, changes the disclaimer to specify that enrollment, not just more information, is available at HealthCare.gov. This change is a positive step but does not go far enough to allow consumers to compare plans. For example, CMS could direct web brokers to display unsupported plans in their cost comparison tools instead of segregating them at the bottom of the page. We support other important provisions that are included in the proposed rule to improve transparency for consumers. The rule would prohibit advertising or other fee-based preferential displays of plans and require web brokers to explain their rationale and methodology for recommending a plan to a consumer.
The proposed rule would also tighten the standards of conduct for agents, brokers, and web brokers to further protect consumers and give CMS additional grounds for enforcement. First, the rule prohibits discrimination based on sexual orientation and gender identity (see additional comments on the nondiscrimination provisions herein). Second, the rule spells out more specific guidelines for what it means to submit accurate client information by making it a violation to submit information such as their own business's email, phone number, or address instead of a client's information. Certain malfeasance, such as using email addresses consumers can't access or submitting inaccurate income, would also violate the rules. Third, automated interactions that lead to unauthorized enrollment or changes to enrollment would be prohibited, information used for identity proofing would need to belong to the client, and special enrollment period (SEP) eligibility would need to be ascertained individually with the consumer informed of the reason for their SEP. While these practices are already prohibited, they persist. We urge CMS to dedicate the funding necessary to support monitoring and enforcing compliance with these and all agent, broker, and web broker standards, including mechanisms to make the comparison of plans more accessible for people with disabilities.
V. Annual Eligibility Determination (Sec. 155.335)
We appreciate HHS' request for comments on incorporating consumer costs into re-determination and re-enrollment procedures. We recommend changing two policies that affect enrollees
The first current policy keeps the enrollee in their past plan if it remains available during the new plan year, even if a change in market conditions has significantly raised the old plan's cost to the consumer. We recommend HHS change this policy so that when the enrollee is certain to be better off in a different plan, the enrollee is shifted to that plan, unless they opt out. The exchange would need to provide notice of the change and reasons for the change--including the same access to community-based behavioral health providers, and reasonable opportunities, both before and after the shift, for the consumer to return to their former plan or drop coverage altogether. We do caution, however, that people with disabilities may choose specific plans, for example because of their need for very particular types of care or their reliance upon a longtime key provider with whom they have established trust and a history of effective medical interventions. Any notice provided under this provision should explain, in plain language, the reason for the change of plan and all potential negative repercussions because of the shift (including, for example, any reductions of coverage of any services and devices or anticipated changes in provider access).
This limited exception to plan continuity would apply only when:
* both plans are sponsored by the same carrier, are included in the same product, have the same provider network--including to community-based behavioral health providers, the same prescription drug formulary, and substantially the same coverage of rehabilitative and habilitative services and devices;
* the new plan neither has higher net premiums or lower actuarial value (AV) than the previous plan; and
* the new plan has lower net premiums, significantly higher AV, or both, compared to the former plan.
Researchers found that in Covered California's 2018 market, fully 30% of households whose coverage was automatically renewed were certain to be better off in a different plan. On average, families were charged an extra
The second current policy provides that if the former plan is no longer available, the enrollee is shifted to the most similar available exchange plan offered by the same carrier, even if consumer costs are far higher with the new plan. This default-assignment rule assumes that the most important factor in most consumers' plan choice involves the carrier and provider networks. Such factors certainly matter to many consumers. However, with consumers
VI. State Selection of Essential Health Benefit (EHB)-Benchmark Plan for Plan Years Beginning on or after
We support the agency's proposal to set an "evergreen" deadline for states to submit revisions to their EHB benchmark selections. Requiring states to submit any new benchmark selections by the first Wednesday in May that is 2 years before the proposed effective date of a new EHB benchmark plan should give the state and HHS sufficient time to solicit comments and opinions from the public and all interested parties
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VII. Provision of EHB (Sec. 156.115)
DREDF and Bazelon support HHS' proposal to eliminate the current provision allowing issuers to substitute benefits between EHB categories. When the provision was enacted in 2019, its purported justification was that giving issuers flexibility would lead to innovative benefit plan designs and greater consumer choice. Unfortunately, consumers with disabilities and chronic conditions have few choices if issuers put out insurance products that substitute broadly needed healthcare services and items used by the general population while avoiding benefits that are more commonly needed by people with specific disabilities. A plan could increase coverage of EHB categories such as ambulatory patient services, prescription drugs, and rehabilitative services and devices and market itself as offering great coverage for athletes and people engaged in "active living," but the substitution will occur at the expense of EHB categories such as hospitalization, habilitative services and devices, and chronic disease management that are disproportionately needed by people with disabilities and chronic conditions. The actuarial substitution of benefits between EHB categories can be used all too easily to "cherry pick and lemon drop" people with disabilities
For example, the category of "mental health and substance use disorder services including behavioral health treatment" was included in the ACA as an essential health benefit, one of ten essential categories of benefits that must be covered by ACA health plans. It is noteworthy that
Substitution enables states to replace its mental health and substance use benefit category with one that, for example, might exclude (or limit) community-based treatment in favor of residential care where it is not necessary or the most integrated setting for delivery of such services. EHB services in this category must include coverage for all medically necessary services, including intensive-home based treatment (e.g., psychotherapy, behavioral management, and medication management services), mobile crisis services and community stabilization, and comprehensive outpatient treatment planning.
Furthermore, the risks for people with disabilities and chronic conditions outlined above are also present if substitution within EHB categories is allowed. In the categories that list multiple components, such as mental health and substance use disorder services, and preventive and wellness services and chronic disease management, the components are not interchangeable. For example, an insured person may need community-based mental health services and treatments without needing residential substance use disorder services. This may initially appear to be an argument for allowing tailored benefit offerings within EHB categories so that individuals may buy a product that provides only the benefits they need, but this presumes both that people with disabilities have static treatment needs and that issuers will not engage in profit-driven analyses to offer a myriad of lesser benefits as a substitute for expensive benefits typically needed only by people with disabilities.
The category of rehabilitative and habilitative services and devices speaks to four types of benefits which cannot be substituted for one another, and CMS has recognized the distinct nature of these benefits in its 2016 NBPP final rule/4 which defines habilitative services and devices as well as rehabilitative services and devices and establishes that limits on the former cannot be less favorable than limits on the latter. In practical terms, the habilitative services and devices needed by a wheelchair user with spinal muscular atrophy in her 30s will not be the same as the rehabilitative needs of a previously non-disabled man
The EHB categories are properly conceived as a comprehensive set of healthcare services needed by people with and without disabilities once disability is properly understood as a mutable and intrinsic facet of life. No one knows when, how, or for long they or a family member may acquire a disability or enter a period of increased healthcare need. This is the underlying rationale for the existence of health insurance. Substituting benefits should not become a game of chance in the name of theoretical flexibility and innovation. We encourage HHS to eliminate the potential to substitute benefits within EHB categories.
VIII. Refine EHB nondiscrimination policy for health plan designs (Sec. 156.125)
4/ Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2016, 80 Fed. Reg. 10749 (
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We strongly support the proposed revision to the EHB nondiscrimination policy. People with disabilities and chronic conditions have endured an extensive history of discrimination in insurance benefit design, ranging from annual or lifetime dollar caps on people with specific health conditions to high co-pays/coinsurance on particular types of benefits and quantity restrictions on mental health and long-term therapeutic benefits. For the most part this discrimination has gone unchecked, purportedly justified by an amorphous concept of actuarial evidence and the acceptance that profit could legitimately take priority over medical necessity and recommended clinical practice. DREDF and Bazelon strongly support HHS' proposal in the 2023 NBPP to, first, provide a conceptual framework for judging discriminatory EHB design against accepted clinical practice and, second, provide an expanded set of concrete examples that illustrate presumptively discriminatory benefit design. However, we want to take the opportunity to emphasize that patient-centered goals, patient buy-in, and community integration can and should remain priority considerations in determining the discriminatory nature of benefit design for individuals with disabilities. For example, denial of wheelchair coverage or reimbursing in-patient mental health services over community-based services is, in part, discriminatory benefit design because they take community-based choices and options away from people with disabilities.
Because disability discrimination was so prevalent and accepted in the US private insurance industry, the specific mechanism for the discrimination can be difficult to recognize and remedy when it isn't something obvious like an outright denial of issuance or charging exorbitant premiums to someone disabled. Many of the tools used by insurers to control actuarial risk and costs, such as limiting healthcare delivery to a provider network, requiring prior authorization, imposing cost sharing or quantity limitations, establishing tiered drug formularies, or using other utilization management techniques, are the same tools that can be wielded against consumers with disabilities, sometimes deliberately, and sometimes without regard for their particular impact on people with disabilities. In addition, many of these tools have historically been an avenue to deny necessary behavioral health care. The requirement that benefit designs must pay regard to a contemporary clinical understanding of which healthcare services are necessary for effective care takes away the arbitrary focus on any given insured person's personal characteristics such as race or the presence of disability, and returns to the fundamental rational for providing healthcare: getting people the services, treatments and items they need to attain and maintain well-being and health.
In considering the question of whether peer-reviewed medical journals should be the only or primary source of information to support a charge of benefit design discrimination, we would like to point out that people with disabilities have specific needs that are highly related to healthcare, but do not always fall strictly within the purview of medical service or treatments. Long-term services and supports (LTSS) can include such personal care needs as assistance with activities of daily living, chore assistance, supervisory care, and assisted decision-making. These are all facets of living successfully and healthily in the community for many people with significant disabilities yet are not considered "healthcare." Peer reviewed articles relevant to the health and well-being of PWD can concern care coordination, patient-centered care, and best practices for meeting LTSS needs but rarely appear in the kind of medical journals listed in the comments to the 2023 proposed rule. An example can be found in a study looking the impact of the resource density of medical and social care on hospitalizations of older adults receiving Home and Community Based Services (HCBS) in
The article has relevance for how insurers structure their provider networks and for clinical best practices in assessing care management and whether a patient has unmet HCBS needs, but it is a peer-reviewed article in a journal devoted to the multi-disciplinary field of gerontology rather than a peer reviewed medical journal. As the field of healthcare finally begins to pay attention to the healthcare impact of unequal access to social determinants of health and implicit bias, important and relevant studies may be published in journals that are not strictly medical, but that have deep implications for how medical interventions should be structured and delivered, and this is especially true for people with disabilities and chronic conditions.
Moreover, peer support, for example, is an evidence-based practice that improves outcomes, increases the use of community-based and home-based care, and reduces treatment costs for individuals with mental health conditions. However, new models and best practices for peer-based support emerge regularly, and restriction to evidence-based practices might limit patient access to necessary peer support. We encourage HHS to include peer support credentialing organizations (e.g.,
We also welcome the inclusion of an example of discrimination based on health conditions. We encourage HHS to also add an example that expands on how needed medical care can be more subtly limited by functional limitation and not only an official diagnosis. For example, an issuer's adoption of an exhaustive list of items that will be covered as rehabilitative or habilitative devices is discriminatory if that list completely excludes items commonly needed by individuals with significant mobility limitations such as wheelchairs and scooters, or excludes items such as ventilators commonly needed by individuals with medical conditions that affect their ability to respirate without assistance. Such exclusions are not keyed to specific diagnoses but deeply discourage people with a range of disabilities and health conditions from enrollment in a plan because medically necessary EHB has been arbitrarily excluded from coverage. We
5 Kim,
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would further suggest including an additional example that illustrates this point as it relates to people with mobility disabilities:
Example: Discrimination Based on Disability or Health Condition
Exclusion of Wheelchair Coverage
a. Background: According to the
b. Circumstance: We note that some issuers completely exclude coverage of wheelchairs or place low annual dollar limitations on their coverage (e.g.,
c. Rationale: Medically necessary wheelchairs enable people to become mobile, remain healthy, and participate fully in community life. An appropriate wheelchair can increase an individual's physical function, level of activity, and control over their own bodies and movements. With proper fitting and customization, it can improve respiration and digestion, prevent life-threatening pressure sores, minimize joint sprain and pain, and reduce the progression of an individual's impairment or secondary conditions. It also increases access to health care, education, employment, and family life. These factors, in turn, significantly improve an individual's independence and quality of life./7
d. Conclusion: Excluding coverage of wheelchairs in a plan benefit design is presumed to be discrimination on the basis of disability and health condition
6 WORLD HEALTH ORG., Guidelines on the Provision of Manual Wheelchairs in Less Resourced Settings 21 (2008), available at https://www.who.int/disabilities/publications/technology/English%20Wheelchair%20Guid elines%20(EN%20for%20the%20web).pdf.
7 See, e.g., World Health Org., supra note 12 at 23;
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under Sec. 156.125. Excluding coverage that is medically necessary in a subset of individuals presumptively conflicts with the prohibition under Sec.156.125 against discriminatory benefit design.
Additionally, another form of disability-based discrimination under Section 504 is the needless segregation of individuals with disabilities. Olmstead v. L.C.,
HHS should prohibit insurers from covering a service (such as personal care or an item of durable medical equipment) for individuals in institutional settings but not covering the same service for individuals living in their own homes or other community settings. Similarly, services should not be covered in greater amounts for individuals in segregated settings.
HHS should prohibit states from making EHB coverage decisions that result in people with disabilities being served needlessly in segregated settings. For example, failure to cover services essential for people with disabilities to live in their own homes or in supportive housing would violate the non-discrimination provision if it results in individuals being served in segregated settings such as hospitals, nursing homes, ICF/DDs or board and care homes and covering the services to support them in integrated settings would not be unduly expensive.
IX. Standardized Plan Options (Sec. 156.201)
DREDF and Bazelon support HHS' proposal to require issuers to offer at least one standardized plan at every product network type, metal level, and in every service area where the issuer also offers non-standardized plans. Plan standardization will enable consumers to readily compare plans standardized cost-sharing requirements across plans, allowing consumers with particular health needs to investigate factors such as premiums that directly impact on the affordability of the plan, and balance those considerations against their own specific quality and coverage needs such as provider network, quality of services, and drug formularies. In addition, standardization serves improves affordability in the Marketplace by ensuring that consumers always have access to at least one plan that exempts certain important services from deductibles. We also support requiring standardized plans to use fixed copays instead of coinsurance, which disproportionately burdens persons with chronic illness and disabilities. DREDF has investigated and verified a wide trend across QHPs in
can also be very difficult for prospective enrollees to uncover and require chasing down information through layers of plan representatives and brokers.
By improving affordability to services and items that under-served populations typically lack access to, the proposal will also help address health disparities in the long run. The effectiveness of standardization in improving access and affordability is evident by the experience of the nine states and the
X. Network Adequacy (Sec. 156.230)
We welcome HHS revisiting network adequacy regulations to ensure that QHP enrollees have meaningful access to all essential health benefits. We also support HHS' proposal to evaluate networks of QHPs and potential QHPs in the FFE prior to their certification, and post-certification review of compliance with appointment wait time standards in response to random sampling or complaints. We urge HHS to closely scrutinize both the standards and review process before allowing states that perform plan management functions to perform their own reviews of network adequacy to ensure that both are indeed at least as stringent as the established federal standards, and that networks are reviewed before QHPs are certified. Similarly, we believe that in future rulemaking, HHS should consider establishing the same standards for SBEs that it uses in the FFE; states can perform their own reviews of network adequacy, but their standards and review process should be at least as stringent as established federal standards and process. We emphasize that network adequacy reviews, whether performed by HHS or by states, must include direct testing of both primary and specialty care, such as secret shopper surveys, or data systems that capture appointment details and include scenarios in which secret shoppers have characteristics such as high weight or mobility disabilities that we know impact on the willingness of providers to accept patient referrals./8
We strongly support HHS' proposal to codify provider and facility types that will be subject to time and distance standards. Placing this information in the regulation is an important step toward ensuring that QHP enrollees have meaningful access to essential health benefits. However, we recommend greater inclusion of special service providers in service areas that we already know present long wait times for people with disabilities. For example, DREDF has heard repeated reports of wheelchair users with complex rehabilitation needs that must wait weeks or even months months to get a needed wheelchair or wheelchair repair, leaving them without mobility within their communities or homes.
8 Lagu T, et al., Access to sub-specialty care for patients with mobility impairment: A survey. Ann Intern Med. 2013;158(6):441-446.
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We also support HHS' proposal to measure appointment wait times. We appreciate that HHS has identified a "short list of critical service categories" to which appointment wait times should apply. We recommend that HHS add Urgent Care to this list. The experience of people during the COVID-19 has highlighted the crucial role that Urgent Care centers provide in delivering care to people
We strongly support HHS' proposal that for plans that use tiered networks, to count toward the issuer's satisfaction of the network adequacy standards, providers must be contracted within the network tier that results in the lowest cost-sharing obligation. In addition, we urge HHS to provide clarity in this rule about QHPs obligations to their enrollees when they are unable to meet time and distance standards or appointment wait time standards. Even the most robust networks will occasionally be unable to provide extremely rare and specialized services, and may experience times when providers are temporarily unavailable, resulting in enrollees having to travel further and wait longer to access care. This point has been driven home over the last few months as many health care providers have experienced temporary staff shortages due to COVID infections. We urge HHS to make clear that in these situations, QHPs must hold their enrollees financially harmless for seeking care from out-of-network or higher tier providers. Of relevance here is the disparate degree to which people with vision, hearing, mobility, or cognition disabilities experienced delayed or foregone medical care as well as food insecurity during the pandemic./9
We support HHS' proposal to require all issuers seeking certification of plans to be offered as QHPs through the FFE to submit information about whether network providers offer telehealth services. For people with disabilities, the broadened availability of telehealth has been a mixed blessing. For some people with disabilities, it has enhanced access to healthcare information, consultation and services while enabling them to continue to isolate. This has been particularly important for people with disabilities and chronic conditions that leave them particularly vulnerable to infection and the risk of hospitalization or death from COVID-19.
On the other hand, we have also heard reports of how people
accommodation measures as sign language interpretation or captioning. As a result, patients with communications disabilities are left struggling to figure out non-integrated communication systems where the provider is on one computer screen while captions appear on a separate secondary device; the patient is unable to lip-read or look at the provider's face, is not necessarily given additional time for the appointment, and must constantly overcome real-time gaps in what can be understood in the appointment. Some providers simply place responsibility for accessible communications entirely on the patient, or only offer stopgap measures in real time without ever addressing the systemic access problem. Over the last few years we have been learning a lot about the use of telehealth, and gathering this information will help inform future rule-making about the role of telehealth providers in comprising a network sufficient to deliver covered services to all enrollees. We believe that more information is needed before rule-making in this area would be prudent, and thus strongly support the proposal to collect this information while encouraging special attention on the need for fully integrated communication accessibility for people with disabilities and non-English language users.
We support HHS' proposal to raise the ECP participation standard to 35 percent. We urge HHS to require QHPs to meet this standard for each category of ECP rather than for all ECPs take as a whole, to ensure that QHP enrollees have adequate access to all of the important types of ECPs which range from
XI. Medical Loss Ratio (Sec. 158.150)
Insurers that have failed to spend at least the required amount of premium revenue on clinical services versus administrative expenses must rebate enrollees. The size of insurer rebates in 2020 and 2021, exceeding
XII. Solicitation of Comments Regarding Health Equity,
DREDF and Bazelon enthusiastically support requirements for QHPs to collect voluntary information on each enrollee's race, ethnicity, gender, sexual orientation, primary language and disabilities. Asking enrollees to provide information on these characteristics as demographic information is essential to uncovering the full range of persistent health inequities associated with any one of these characteristics, as well as identifying the as yet unknown impact of compounded disparities occurring among individuals
The pandemic highlighted the multiple data collection gaps that exist for people with disabilities, from the lack of disability and functional impairment demographic information on death certifications to a dearth of detailed knowledge about the functional impairment and accommodation needs of HCBS users in the community. HHS can play a critical leadership role among all federally conducted and funded health programs in calling for the broad adoption of validated functional impairment questions such as the 6 question disability set used in the
Recommendations already exist from the
We also recommend that HHS set an example by improving data collection in its own programs and activities, such as collecting comprehensive demographic data in
10/ https://williamsinstitute.law.ucla.edu/publications/data-collection-sogi/; https://williamsinstitute.law.ucla.edu/publications/smart-so-survey/; https://williamsinstitute.law.ucla.edu/publications/geniuss-trans-pop-based-survey/
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HealthCare.gov and requiring SBEs to do the same. We still strongly recommend that QHPs be required to also collect this data as some individuals will be more comfortable providing demographic data to their plan or provider
Finally, DREDF and Bazelon support a requirement for QHPs to obtain
XIII. Conclusion
Thank you again for the opportunity to comment on the many important issues raised in the 2023 NBPP proposed rule for people with disabilities. If you have any questions on the above, please contact
Sincerely,
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The proposed rule can be viewed at: https://www.regulations.gov/document/CMS-2021-0196-0001
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