DREDF Supports Discussion Draft of Legislation Making Medicaid Home and Community-Based Services Mandatory

April 26, 2021

via electronic mail to HCBSComments@aging.senate.gov

Re: Home and Community-Based Services Access Act Discussion Draft

Dear Senators Brown, Casey, Hassan, and Representative Dingell,

The Disability Rights Education and Defense Fund (“DREDF”) appreciates the opportunity to provide comment on the discussion draft of the Home and Community Based Services Access Act (HAA). 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 has significant experience in both the home and community-based services (HCBS) that many people with disabilities rely upon to live independently and productively in their communities and Medicaid, the largest single payment source for HCBS in the country.[1]

DREDF contributed to and signed the HHA comment submitted by the Consortium for Citizens with Disabilities and submitted earlier today. We strongly support the broad range of HCBS recommendations and observations put forth in that letter. DREDF is providing here a few additional and specific comments keyed to the current language in the HAA, and some more general comments on the workforce development piece that will be Section 7 of the act.

Section Recommendations

1. At page 4: Section 2(9) states that one of the purposes of the HAA is “[t]o support over 65,000,000 unpaid family caregivers who are often providing complex services and supports to aging adults and people with disabilities because of a lack of affordable services, workforce shortages, and other inefficiencies of the Medicaid system.” DREDF recommends deleting “other” (highlighted in this quoted portion of the text). There are multiple reasons for, as well as multiple problems with, the wide prevalence of unpaid family caregivers and these cannot all be traced to the inefficiencies of the Medicaid system as the current language implies. We understand that this act is focused on Medicaid and proposes significant improvements to Medicaid’s delivery of HCBS, but innovative solutions to improve HCBS affordability, workforce development, and healthcare integration even outside of Medicaid will still be needed by a range of people with disabilities.
2. At page 5: Section 3(a)(1) defines HCBS as “based on an individualized assessment (as described in paragraph (4)) of such individual in a setting that.” DREDF agrees that individualized assessments for HCBS needs must be based on the needs that an individual with disabilities will have in a community-based setting, but are wary that the language used here could be used by providers or agencies to delay the preliminary assessments needed to authorize services and supports that must be available as soon as a hospitalized or institutionalized individual starts living in a community-based settings. We are aware of instances where Medicaid beneficiaries are told they cannot be properly assessed for their HCBS needs until they are back in their home, but they safely go home without new equipment such as toilet and shower seats or additional personal care hours that cannot be authorized until an assessment is made, leaving the individual in a catch-22. The language highlighted in the quoted portion above could be changed to “as they would potentially function in.”
3. At page 11: the definition of “eligible individual” requires “a functional impairment (as defined in subparagraph (B)) (not taking into account any items or services, or any other ameliorative measures, furnished to such individual to mitigate such impairment) that is expected to last at least 90 days;” DREDF notes at least two circumstances in which a Medicaid beneficiary may experience functional impairments that last less than 90 days but should remain an “eligible individual.” First, some individuals have episodic disabilities or conditions such as cancer or mental health disability where the need for assistance with activities of daily living or instrumental activities of daily living may arise and recede as symptoms of the disability/condition change over time or treatment is stabilized. Second, some individuals with disabilities may have relatively brief but intense periods of greater HCBS need arising out of circumstances such as, for example, contracting the COVID-19. In both cases, the individual with a disability should not have to go through the delay of establishing eligibility and HCBS assessment repeatedly merely because their functional impairment levels fluctuate or are anticipated to last less than 90 days, especially if the result is that a Medicaid beneficiary must forego needed HCBS that would have enabled them to keep working and remain in their home, not pay out-of-pocket for care, or rely on family members or friends to provide care while foregoing paid employment.
    
   • For similar reasons, DREDF recommends at page 12, adding the following highlighted word to the definition of “functional impairment” as follows: ” “FUNCTIONAL IMPAIRMENT.For purposes of subparagraph (A), the term functional impairment’ means, with respect to an individual the inability of such individual to consistently perform, without assistance, 2 or more . . .”.
4. At page 14-15: the Secretary, in conjunction with the Administration for Community Living, must establish standards to ensure that the methodologies used for individualized assessment are sound and evidence-based and ”(v) require such methodologies to be made available on the public website of the State and tested for reliability and validity.” DREDF strongly recommends adding to (v) the requirement that individualized assessment methodologies also be tested for compliance with non-discrimination and disability, racial/ethnic, age, gender, sexual orientation, and gender identity equity. Established methodologies can be developed during time periods in which there was less awareness of the need for diverse participants and how implicit bias shapes how data is gathered and used. For example, an HCBS assessment methodology could have or lack questions and weighting that disadvantages women who tend to live longer and have fewer paid positions throughout their life, or Native Americans who may have a familial or cultural structure of unpaid caregiving. The main point is to create an explicit obligation within the act to develop transparent tools for reviewing individualized assessments for systemic and implicit bias.
5. At page 20: Under the HCBS grant program established in Section 5, states have to develop an implementation plan that includes under subsection (3): “A list of any home and community-based services provided under the State Medicaid plan (including any waiver of such plan) as of the date of enactment of this Act, including a breakdown of use of such services by different disability populations and by gender, race, ethnicity, geography, and other demographics, compared to such services that are required under the amendments made by section 3, and a description of numerical goals to increase access to such services that have barriers to access for populations in need of such services.”
    

   DREDF strongly supports this data requirement in the HAA as it will pave the way to understanding intersectional HCBS use and health disparities, but also knows it will likely take some time before states actually have this data in hand given the current lack of granular disability data collection in most states. Many states still have only disability information for Medicaid beneficiaries by diagnostic codes rather than functional impairment status, and this is particularly true for Medicaid expansion populations that did not qualify for Medicaid on the basis of a specific disability. We recommend giving states the obligation to include in their implementation plan a clear blueprint with explicit data capture goals and timelines, along with the obligation to produce data that will establish whether numerical HCBS goals for specific populations have been met. This would allow states to move forward on applying for grants and improving access to HCBS at the same time as they improve HCBS data collection, rather than set granular HCBS data collection as a precondition to increasing access to HCBS.

6. At page 21: The state implementation plans must also include “A plan for how such services will be coordinated with other relevant State agencies, such as housing, transportation, child welfare, food and income security, and employment agencies.” DREDF recommends explicitly including state correctional/rehabilitation agencies given rapidly aging prison populations with long-term care needs and a dearth of social service organizations that support older of disabled justice-involved individual while in jail or upon release.[2] While Medicaid funding cannot generally be used to provide long-term services and support (LTSS) during incarceration, a smooth transition to Medicaid HCBS will be critically important for eligible individuals who return to the community upon completion of incarceration. This recommendation is also directed at deepening equitable access to HCBS given the disproportionate number of Black and brown persons, and the far lower average income, of those who are incarcerated.[3]
7. At page 23: Section 6(a)(1) addresses Quality of Services and states that “the Director of the Agency for Healthcare Research and Quality, in consultation with State Medicaid Directors, shall develop standardized, State-level metrics of access to, and satisfaction with, providers, including primary care and specialist providers, with respect to individuals who are enrolled in State Medicaid plans under title XIX of the Social Security Act, broken down by gender, race, ethnicity, geography, and other demographics.” DREDF recommends explicitly including “ancillary providers” along with primary care and specialist providers. Many insurers and states characterize “ancillary providers” as those healthcare providers who are not acute care providers and the category often includes home health service providers, personal care assistant providers, pharmacy and rehabilitative service providers, durable medical equipment providers, and physical, occupational, and speech therapists.[4] These are among the healthcare providers most likely to be delivering care in the community and they need to be included in the state’s development of metrics for consumer access and satisfaction.

HCBS Workforce Comments

DREDF considers “emergency HCBS back-up services” as necessary not only for the safety and well-being of people with disabilities but also a concept that is inherently integral to workforce development because it provides direct care professionals (DSPs) and personal care assistants (PCAs) with the kind of employment flexibility needed to attract good workers who also have familial or other responsibilities such as child care, family members with long-term care needs, self-care needs, and so forth. In particular, robust HCBS back-up services could afford women greater opportunity to maintain a career as a DSP or PCA during years when they are bearing and caring for children, leaving and returning to the workforce, or trying to build flexible careers and hours as their own life responsibilities shift over time. In this way, 24/7 responsive emergency back-up is not something that is needed only during public health emergencies or natural disasters, but is an overlooked component of HCBS infrastructure that requires careful thought.

An effective HCBS back-up system will require shift workers and specialized skill sets and experience that could merit higher compensation or supplemental wages. HCBS emergency back-up employees should be considered critical human infrastructure in the same way that other emergency workers, such as police or fire department employees can be considered human infrastructure. An individual who cannot leave their bed in the morning because their personal care assistant could not come or whose wheelchair breaks down leaving them stranded in the road may have little choice but to call the police of fire department, and would wind up receiving less trained and more expensive assistance than a small strike team of specialized HCBS emergency workers. Any discussion of HCBS for people with disabilities and older persons must include consideration of effective emergency back-up services.

Thank you again for this opportunity to provide comments on the HAA. The proposed legislation is a long-held goal of the disability community and will make an incredible difference to the lives of people with significant disabilities. Please feel free to contact Silvia Yee at syee@dredf.org or 510-644-2555 x5234 if you have any question concerning the above.

Sincerely,

Silvia Yee
Senior Staff Attorney

[1] MaryBeth Musumeci, Robin Rudowitz, & Rachel Garfield, “How Could $400 Billion New Federal Dollars Change Medicaid Home and Community-Based Services?”, (April 20, 2021), https://www.kff.org/report-section/how-could-400-billion-new-federal-dollars-change-medicaid-home-and-community-based-services-issue-brief/#endnote_link_520021-1.

[2] National Association of Area Agencies on Aging, Supporting America’s Aging Prisoner Population: Opportunities & Challenges for Area Agencies on Aging (2017), https://www.n4a.org/Files/n4a_AgingPrisoners_23Feb2017REV%20(2).pdf.

[3] Chandra Bozelko, “Prisons are long-term care facilities. So why don’t inmates get priority for Covid-19 vaccination?”, Stat, March 17, 2021, https://www.statnews.com/2021/03/17/prisons-long-term-care-why-dont-inmates-priority-covid-vaccine/.

[4] See for example https://www.horizonblue.com/sgs/tools-services/find-doctor/what-are-ancillary-services.