By electronic transmission to http://www.regulations.gov
July 3, 2023
Centers for Medicare & Medicaid Services
Department of Health and Human Services
P.O. Box 8016, Baltimore, MD 21244–1850
Re: Docket Number CMS-2442-P: Medicaid Program; Ensuring Access to Medicaid Services
To Whom It May Concern:
The National Council on Disability submits these comments on the subject Proposed Rule. NCD is an independent Federal agency charged with advising the President, Congress, and other Federal agencies on policies, programs, practices, and procedures that affect people with disabilities. Per its authorizing statute, NCD is required to “review and evaluate on a continuing basis - policies, programs, practices, and procedures concerning individuals with disabilities conducted or assisted by Federal departments and agencies…in order to assess the effectiveness of such policies, programs, practices, procedures…in meeting the needs of individuals with disabilities.”
We preface our comments by congratulating CMS on the publication of this important and thorough Proposed Rule which would strengthen Medicaid HCBS in many ways, including instituting concrete requirements to help alleviate the direct care workforce shortage, to assure HCBS beneficiaries health and safety, and to increase access to HCBS.
In NCD’s 2022 report, Strengthening the HCBS Ecosystem – Responding to Dangers of Congregate Settings during COVID-19 (HCBS report) we examined specific barriers to fully successful HCBS and made recommendations to address them. The Proposed Rule discusses and seeks to address three concerns that we raise in our report: the direct care workforce shortage; the “institutional bias;” and waiting lists for HCBS. We, therefore, begin our comments with these topics.
Direct Care Workforce Shortage
NCD’s 2022 HCBS report and our 2021 Progress Report: The Impact of COVID-19 on People with Disabilities, describe the chronic shortage of direct care support workers that became worse during the COVID-19 pandemic, and recognize it as a significant barrier to community living for people with disabilities. The Proposed Rule recognizes much of the same information about this critical workforce shortage and its cause, including low wages and a lack of benefits, or limited benefits, which contribute to high worker turnover and workers leaving the profession altogether. To further describe the magnitude of the shortage, a 2021 ANCOR study of direct support providers revealed that 83% of providers were turning away new referrals, a 25.8% increase since the beginning of the pandemic; 63% of providers were discontinuing programs and services, a staggering 85.3% increase since the beginning of the pandemic; 92% of providers were struggling to achieve quality standards, a 33.3% increase since the beginning of the pandemic; and 71% of case managers were struggling to find available providers, citing difficulty to connect families to long-term services and supports due to lack of available providers. Home health agencies attribute this to the inability to recruit and retain staff.
The shortage of direct care workers puts people with disabilities who live in home and community-based settings at danger of institutionalization and is a significant barrier to community transition for people with disabilities in institutional settings. Until we can recruit and retain a robust direct care workforce, such as home health aides and personal care attendants, to help people with disabilities live in their homes, the myriad of problems and dangers of congregate living will continue to endanger people with disabilities.
NCD commends CMS for proposing specific and practical changes to address the wage and benefit issue and support the proposal to require a minimum percentage of all Medicaid payments for homemaker services, home health aide services, and personal care services to be spent on compensation for direct care workers (HCBS Payment Adequacy (§§ 441.302(k), 441.464(f), 441.570(f), 441.745(a)(1)(vi)). We agree that this proposal would benefit both direct care workers and individuals receiving Medicaid HCBS because supporting and stabilizing the direct care workforce will result in better qualified employees, lower turnover, and a higher quality of care. We also agree that that ensuring adherence to a Federal standard of the percentage of Medicaid payments going to direct care workers is a concrete step in recruitment and retention efforts by enhancing salary competitiveness in the labor market.
You note that States indicate that 80 percent is an appropriate threshold, and you seek comment on the percentage. NCD recommends that CMS adopt a threshold of 85 or 90 percent. We base this on (1) the critical need for these workers; (2) CMS research that indicates that some States have successfully implemented thresholds of 90 percent; and (3) CMS reasoning that since these services are commonly conducted in people’s homes and general community settings, the indirect costs associated with them are low. Should CMS decide to implement an 80 percent threshold, we propose the establishment of a graduated schedule for this percentage to incrementally increase to 85 percent, and subsequently 90 percent within a short and defined period – for example, over the course of four years.
NCD also supports CMS proposal to define “compensation” for direct care workers to include salary, wages, and other remuneration as defined by the Fair Labor Standards Act; benefits (such as health and dental, sick leave, and tuition reimbursement); and the employer share of payroll taxes for direct care workers delivering services under section 1915(c) waivers.
The Institutional Bias and Waiting Lists
In the Proposed Rule, CMS defines the “institutional bias” and its relationship to the provision of HCBS: the “institutional bias” requires State Medicaid programs to provide medically necessary nursing facility services but makes HCBS optional. In our HCBS report, we describe our concerns with the “institutional bias” because it continues to make it too easy to institutionalize people with disabilities who want to live, and can live, in community-based settings with HCBS. As you point out, deinstitutionalization of people with disabilities has been a national goal for decades, under the Americans with Disabilities Act (ADA) of 1990, section 504 of the Rehabilitation Act of 1973, and the Supreme Court's decision in Olmstead v. LC, in which the Court held that unjustified segregation of persons with disabilities is a form of unlawful discrimination under the ADA.
We agree with CMS that HCBS plays an important role in States' efforts to achieve compliance with these laws and the Olmstead decision, however, as noted in NCD’s HCBS report, as of July 2021, there were more than 850,000 people with intellectual disabilities and developmental disabilities on waiting lists for HCBS services, which underscores the urgent need for States to increase funding for HCBS so that many more eligible beneficiaries can utilize these services. The Proposed Rule states that, in FY 2019, 30 States spent at least 50 percent of Medicaid Long-Term Services and Supports expenditures on HCBS. This is progress, however, it is not sufficient to provide HCBS to hundreds of thousands of people with disabilities in institutional settings who are eligible for HCBS, and are on waiting lists to transition to home and community based settings. As you note, the Kaiser Family Foundation recently reported that over 650,000 people were on HCBS waiting lists, adding the caveat that about half of this number are on waiting lists where eligibility has not yet been established by the State Medicaid program. We stress that, even if half of the 650,000 individuals were deemed ineligible for HCBS, there were still over 325,000 eligible individuals on waiting lists for HCBS. Many have been on waiting lists for an extended time.
The Olmstead decision was issued 24 years ago. Had States offered HCBS to more eligible people with disabilities prior to the COVID-19 pandemic, we would not have had the immense loss of life of people with intellectual and developmental disabilities who were living in deadly institutional settings during the pandemic. The unnecessary loss of life once again underscored the danger and risks associated with an “institutional bias” and highlighted the deficiency in State resources devoted to HCBS.
The necessity for States to increase spending on HCBS beyond the 50% mark is undeniable, barring an amendment to the Medicaid statute mandating provision of HCBS. As you accurately describe, and as is widely acknowledged, HCBS is a more cost-effective solution compared to institutionalized care; the majority of people at risk for institutionalization express a preference for staying in their homes over residing in institutional settings; and bolstering HCBS aids States in achieving compliance with Federal law and the ruling in the Olmstead decision.
Waiting lists for HCBS signal the insufficient allocation of resources by State Medicaid programs. However, the inconsistent usage of waiting lists across States, with differing requirements for joining, complicates the measurement of service needs. For instance, in some States, individuals must be determined eligible for waiver services prior to joining the waiting list. Conversely, in other States, expressing interest in receiving HCBS is enough to be placed on a waiting list. Such disparities make it challenging to accurately gauge the demand for HCBS. As you describe, because the Federal government does not require States to submit any information on the existence or composition of waiting lists, there are information gaps on the accessibility of HCBS within and across States which prevent CMS from overseeing and monitoring States' use of waiting lists in their section 1915(c) waiver programs. In addition, we are concerned that, as you describe, some States are operating waiting lists for their section 1915(c) waiver programs even though they are serving fewer people than their CMS-approved enrollment limit or cap, and States are expected to enroll individuals up to their CMS-approved enrollment limit or cap before imposing a waiting list. But, because CMS does not require States to report on their waiting lists, it cannot determine the extent to which States are using “unauthorized” waiting lists or to work with States to address them. We agree that information is needed from State Medicaid programs on their use of waiting lists.
NCD supports your proposal to require states that use waiting lists for their waiver programs to report on an annual basis (1) how the waiting list is maintained, including in that description whether people on the waiting list are screened for eligibility and if they are periodically rescreened for eligibility; (2) how many individuals are on the waiting list; and (3) the average amount of time that individuals newly enrolled in the waiver program in the past 12 months were on the list of individuals waiting to enroll in the waiver program, if applicable. Having this information will help us better understand how long people remain on the HCBS waiting list. We also support your proposal to require States to report on an annual basis the average time that individuals wait for HCBS to begin after they are approved to receive homemaker services, home health aide services, or personal care services. (Supporting Documentation for HCBS Access (§§ 441.303(f)(6) and 441.311(d)(1)).
NCD’s Comments on Other Proposed Changes
Person-Centered Service Plans (42 CFR 441.301(c), 441.450(c), 441.540(c), and 441.725(c))
Person-centered planning is crucial in the provision of care and for the assurance of health and welfare for section 1915(c) waiver program participants. We agree that the requirements to reassess functional need and to update the person-centered service plan based on the reassessment, are necessary to allow an individual's services to change to meet the changing needs of beneficiaries.
We support CMS’ proposal to require that States show that a reassessment of functional need was conducted at least annually for at least 90 percent of individuals continuously enrolled in the waiver for at least 365 days. We also support the proposal to require that States show that they reviewed the person-centered service plan and revised it based on the results of the required reassessment of functional need at least every 12 months for at least 90 percent of individuals continuously enrolled in the waiver for at least 365 days.
Incident Management System (§§ 441.302(a)(6), 441.464(e), 441.570(e), and 441.745(a)(1)(v))
All people receiving waiver program services should be safe and free from abuse and neglect. NCD shares your concern about the health and welfare of HCBS recipients. As you inform, States are required, under federal statute and regulations, to have necessary safeguards to protect the health and welfare of individuals receiving section 1915(c) waiver program services, but recent reports, which you highlight, reveal the risks to beneficiaries associated with poor quality care and inadequate oversight of HCBS. We commend CMS for examining this issue and proposing concrete actions.
We support CMS’ proposal to:
Require States to provide an assurance that they operate and maintain an incident management system that identifies, reports, triages, investigates, resolves, tracks, and trends critical incidents. We agree that a system to identify and address harm during the course of service delivery is necessary for protecting the health and welfare of individuals receiving section 1915(c) waiver program services.
Establish a minimum standard definition of a critical incident to include, verbal, physical, sexual, psychological, or emotional abuse; neglect; exploitation including financial exploitation; misuse or unauthorized use of restrictive interventions or seclusion; a medication error resulting in a telephone call to or a consultation with a poison control center, an emergency department visit, an urgent care visit, a hospitalization, or death; or an unexplained or unanticipated death, including but not limited to a death caused by abuse or neglect.
Require States to require providers to report critical incidents that occur during the delivery of section 1915(c) waiver program services, or any critical incidents that are a result of the failure to deliver authorized services.
Require States to use other data (e.g., claims data, Medicaid Fraud Control Unit data, and data from other State agencies such as Adult Protective Services or Child Protective Services), to identify critical incidents that are unreported by providers and occur during the delivery of section 1915(c) waiver program services, or as a result of the failure to deliver authorized services. We agree that this information can play a key role in identifying serious instances of harm to waiver program participants, which may be unreported by a provider.
Require States to separately investigate critical incidents if the investigative agency does not report the resolution of an investigation within State-specified timeframes.
Grievance System (§§ 441.301(c)(7), 441.464(d)(2)(v), 441.555(b)(2)(iv), and 441.745(a)(1)(iii))
NCD agrees that the current Medicaid grievance structure, as CMS describes, creates a disparity between managed care beneficiaries and Fee for Service (FFS) HCBS beneficiaries, because it does not provide a venue for FFS HCBS beneficiaries to raise concerns about issues that they may experience which are not subject to the fair hearing process, such as the failure of a provider to comply with the HCBS settings requirements.
We support CMS’ detailed proposal to require States to establish grievance procedures related to compliance with the person-centered planning and service plan requirements and the HCBS settings requirements, for Medicaid beneficiaries receiving section 1915(c) waiver program services through an FFS delivery system.
Home and Community-Based Services (HCBS) Quality Measure Set (§§ 441.312, 441.474(c), 441.585(d), and 441.745(b)(1)(v)
NCD supports CMS’ proposal to institute a set of nationally standardized quality measures specifically for HCBS to replace reporting requirements that vary across authorities and are not consistent across and within services. We share your concern that a lack of standardization has resulted in thousands of metrics and measures currently in use across States, with different metrics and measures often used for different HCBS programs within the same State, resulting in the inability to accurately compare HCBS quality and outcomes within and across States or to compare the performance of HCBS programs for different populations.
We also support CMS’ proposal to require States to report data stratified by several demographic categories, including disability. This data will help in achieving more equitable and reliable data collection on people with disabilities.
In closing, NCD commends CMS for this Proposed Rule. It is poised to improve access to care, quality of care, beneficiary health and quality of life outcomes. We hope that these comments are helpful in achieving these goals for people with disabilities who receive HCBS. Should you have questions about anything in this response, please contact Joan Durocher, General Counsel and Director of Policy at firstname.lastname@example.org and Ana Torres-Davis, Senior Attorney Advisor, at email@example.com.
Andrés J. Gallegos, J.D.
 29 U.S.C. § 781(a)(5) - (a)(6).
 ANCOR. State of America’s Direct Support Workforce Crisis (2022). https://www.ancor.org/resources/the-state-of-americas-direct-support-workforce-crisis-2022/
 527 U.S. 581 (1999).
 Medicaid Program; Ensuring Access to Medicaid Services, 88 Fed. Reg. 27960, 27964 (May 5, 2023).
 Burns, A., M. O'Malley Watts, M. Ammula. A Look at Waiting lists for Home and Community-Based Services from 2016 to 2021. Kaiser Family Foundation. www.kff.org/medicaid/issue-brief/a-look-at-waiting-lists-for-home-and-community-based-services-from-2016-to-2021/