NAHC Advises Congress on Key HCBS Legislation

Medicaid coverage of home and community-based services is, by far, the leading source of support for health care in the home for millions of individuals with disabilities and infirmities of all kinds beyond the incredible efforts of unpaid family and friends who are the backbone of home caregivers in our nation.

Each year, millions of children, adults, and seniors are provided the opportunity to have their health care needs met at home in a cost-effective and clinically successful manner. Still, there are hundreds of thousands of individuals on waitlist for home care and many more outside without access to comprehensive home care options due to uneven supports by state Medicaid programs. The HCBS Access Act of 2021 addresses many of the limitations and weaknesses in the current Medicaid home care support system.


The HCBS Access Act of 2021 (HAA) would establish a mandated HCBS benefit in Medicaid. Such action is far preferable to the longstanding optional status that the host of HCBS programs has had that has led to a wide range of home care supports as alternatives to institutional care. The optional status of home care in Medicaid is the core reason why the rebalancing of Medicaid long term services and supports has been significantly uneven across the states. The HHA would also operate with 100% federal financing thereby incentivizing states to rebalance supports in favor of home care.

To ensure that state Medicaid actions in implementing HAA result in narrowing of the wide variation of services and supports that are available in each state, we recommend the following revisions to the bill draft:

  1.   HAA should include the establishment of federal standards on the minimum level of the scope and duration of services covered under new “home and community-based services” Medicaid benefit.  Doing so would address the pronounced disparities that currently exist between various states’ home care programs. With the program supported with 100% federal financing, states should not have full control in establishing the benefit scope and duration.
  2.   HHA should include federal standards for rate setting and payment methodologies to ensure care access and supports for frontline caregivers. Today, many Medicaid programs are plagued with low payment rates that translate to care access barriers and inadequate compensation to caregivers. For example, if a state provides $12 per hour payment rates, home care employers cannot provide a living wage to caregivers and staff recruitment and retention is unmanageable. There should also be a recognition that any increase in caregiver compensation in Medicaid HCBS will affect the cost of care in Medicare home health and hospice, VA and Agency on Aging programs, and private pay home care where the same Medicaid caregivers often provide services. The bill may then include provisions to provide a directive for rate adjustments in those programs and financial support to consumers with private pay home care.
  3.   Any successful HCBS program must recognize the wide differences in the patient populations served. That means that programs should include full access to both self-directed care models and agency model service providers. Many HCBS patients desire and are capable of managing self- directed care. However, there is a significant segment of the HCBS population that does not want to and/or is not fully capable of taking on the role of an employer that is required with self- directed care. Further, an agency model option provides protection for individuals who face gaps in care that occur when their caregiver is absent or terminates the relationship.
  4.   With respect to HCBS caregivers, recruitment and retention has been a longstanding concern. With reasonable rate setting, the wages of the direct caregiver workforce can be improved. However, another issue is the availability of health insurance. It might be useful to consider steps that would make health insurance affordable through the ACA marketplace or action that would make Medicaid eligibility more easily accessible for that workforce. The options could include a disregard of income earned through direct caregiving employment in determining subsidization status in the ACA marketplace or Medicaid eligibility for the individual or household.
  1.   Given that many of the Medicaid HCBS recipients are dually eligible for Medicaid, it would be helpful for the bill to include a directive that the Secretary spell out specifically how the two programs interrelate in terms of scope of coverage. The proposed expansion of Medicaid HCBS should ultimately provide Medicare savings as individuals will have greater options to avoid costly institutional care through a combination of Medicare and Medicaid coverage of health care at home.
  2.   Stakeholders, including recipients and caregivers, should have the benefit of full opportunity to participate in any state policymaking to implement the HAA as well as the advisory panel established by the HAA. The bill should include a direct mandate on such.


The following are comments direct to specific provisions in the bill;

  1.   In the proposed Section 1905(hh)(2)(A), a list of services is included by reference to current provisions with sections 1905 and 1915. Section 1905(a)(18) on hospice services is not included while “hospice services” is referenced in the proposed section 1905(hh)(2)(A)(x). We recommend that section 1905(a)(18) be included in those provisions referenced in (A) to avoid any confusion regarding the intent to include hospice services within the scope of covered HCBS services.
  2.   We recommend that the proposed Section 1905(hh)(2)(A) also include “palliative care services” among the list of services that follows (A). The bill could offer a definition as well- “Palliative care means interdisciplinary patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice. Palliative care is appropriate at any age and any stage in a serious illness.” A conforming modification should be included in the patient eligibility standards as not all of patients needing palliative care have ADL or IADL related impairments.
  1.   We further recommend that Section 1905(hh)(2)(A) also include “meal and nutritional supports” as a listed service given its role in social determinants of health.
  1.   Section 1905(hh)(2)(B)(ii)((I)(bb) should be modified to be “HCBS providers” and to also include “HCBS provider organizations.” This would be consistent with the references to disability rights and aging organizations. Provider organizations offer a collective perspective that may be distinct from the voice offered by a single provider entity.
  1.   Section 1905(hh)(2)(B)(iv) should be modified to require that the panel’s report be made public and that the report include that any actions by the Secretary regarding additions or removals of home and community-based services from the HCBS benefit be subject to full notice and comment under the Administrative Procedures Act.
  1.   As a point of clarification, does the standard of eligibility in Section 1905(hh)(3) mean that all the existing HCBS services under current Medicaid law remain in place and that those benefits are applicable to individuals that do not meet the mandated HCBS eligibility standards in the HAA? For example, the current Medicaid home health benefit serves individuals who do not have impairments that are expected to “last at least 90 days” or who have functional impairments that require full assistance with 2 or more ADLs or IADLS.  We recommend maintaining Medicaid benefits that appropriately cover such individuals.
  2.   Section 1915 is amended by adding “(m) Sunset of Provisions Relating to Home and Community-Based Services.” With the proposed 5 year window for implementation of HAA, we recommend including a provision that requires states to maintain at least the level of existing HCBS programs through that 5 year period.
  1.   The HAA provides for grant monies to states to develop HCBS implementation plans and to submit such plans to the Secretary. We recommend that states be required to provide notice and an opportunity to comment on any proposed plan in advance of submission to the Secretary.
  2.   It is essential that the HAA specifically spell out how the measure is to be applied in the context of a managed Medicaid HCBS program. This would include the nature, scope, and duration of the benefits, rate setting, access and network standards, and quality of care measures and reporting. With multiple states employing managed care contractors to replace traditional fee-for-service coverage,  the implementation of HAA through these contractors necessitates the inclusion of direct requirements addressing how HCBS is to be managed within a managed care organization.
  1. One area that should be considered is the circumstance where an HCBS patient is hospitalized or temporarily admitted to a nursing facility. We recommend that states be required to maintain the eligibility and service plan status of the individual for a period of no less than 30 days so that HCBS is available immediately at the time of discharge from the facility. A number of states have such an approach in current HCBS programs.
  2. With respect to establishing PACE as a mandatory HCBS benefit, it is essential to include quality of care measures and reporting in PACE. This should include all aspects of PACE care delivery including the use of hospice services for end-of-life care.  Use of the CMS Compare site for public reporting is recommended, particularly for dual Medicare-Medicaid eligible services and Medicare Advantage enrollees.


An essential component of Medicaid HCBS reform is the inclusion of uniform quality of care measures and public reporting. Currently, HCBS measures are nascent at best. We strongly recommend that the bill included detailed quality of care standards. This effort could be facilitated by the National Quality Forum (NQF) as many other sectors have had the benefit of NQF expertise.

NAHC will continue to work with congressional leaders on the HCBS Access Act of 2021.