NHeLP Comments: Medicaid Program; State Plan Home and Community-Based Services, 5-Year Period for Waivers, Provider Payment Reassignment, and Setting Requirements for Community First Choice

VIA ELECTRONIC SUBMISSION

Centers for Medicare & Medicaid Services Department of Health and Human Services PO Box 8016

Baltimore, MD 21244-8016

Attention: CMS-2249-P2

Medicaid Program; State Plan Home and Community-Based Services, 5-Year Period for Waivers, Provider Payment Reassignment, and Setting Requirements for Community First Choice

Dear Sir/Madam:

The National Health Law Program (NHeLP) protects and advances the health rights of low income and underserved individuals.  The oldest non-profit of its kind, NHeLP advocates, educates and litigates at the federal and state levels. We appreciate the opportunity to provide CMS with comments on the proposed regulations for the ß 1915(i) state plan HCBS benefit and the definition of integrated settings.

We provide comments below on the implementation of the state plan benefit emphasizing promotion of self-directed HCBS, person-centered services, and transparency and monitoring for HCBS programmatic standards. With respect to the integrated setting definition, NHeLP applauds CMS for the iterative process involving stakeholder input that has led to the proposed rule. We believe the rule represents an important advance in the integrated setting standard. Our recommendations emphasize the need for CMS to more zealously guard meaningful integration for persons with disabilities while at the same time recognize the viability of some HCBS settings which may be important for older adults. While it is difficult to generalize about these broad populations, and drawing clear definitions is a challenge, we recommend an approach which we believe reflects the objectives of many individuals who depend upon HCBS.

ß 430.25 Waivers of State plan requirements.

The ACA creates authority for states to request 5-year initial approval periods for 1915(b) and (c) waivers that include dual eligibles, and allows renewals for 5-year periods. However, the ACA also qualifies that authority, allowing renewal ìunless the Secretary determines that for the previous waiver period the conditions for the waiver have not been met or it would no longer be cost-effective and efficient, or consistent with the purposes of this title, to extend the waiver.î Social Security Act ß 1915(h)(2)(A). NHeLP recommends that the regulation be strengthened to clearly articulate the requirements for special 5-year approvals and extensions of waivers experimenting with system design for dual eligibles. For example, a waiver which effectively reduces services for dual eligibles should not be approvable as it is not ìconsistent with the purposesî of Title XIX. We recommend that CMS include in the regulation itself a requirement, like the one stated in the preamble to the regulation, that determinations ìbe made regarding applications for 5-year waivers in a manner consistent with the interests of beneficiaries and the objectives of the Medicaid program.î 77 Fed. Reg. 26831.

We believe that CMS should clarify whether a waiver is approvable for 5-year periods if it targets a population that includes only a very small proportion of dual eligibles.

ß 435.219 Individuals receiving State plan home and community-based services.

We commend CMS for proposing regulations to implement optional categorical eligibility for Medicaid for individuals in need of ß 1915(i) services. This category has the potential to help secure coverage for uninsured and underinsured individuals, and will provide states with a useful option to consolidate coverage groups.

We commend CMS for the provisions at ß 435.219(c) requiring no asset test for individuals in the 150% and below eligibility option, and requiring that states use income standards which are ìreasonable, consistent with the objectives of the Medicaid program Ö and in the best interests of the beneficiary.î We urge CMS to retain this policy and language.

We recommend that ß 435.219(c) include a requirement that any alternate income methodology cannot be more restrictive than the SSI standard, as described at preamble at 77 Fed. Reg. 26385.

ß 436.219 Guam, PR, and Virgin Islands

See comments to ß 435.219 above.

ß 440.182óState plan home and community-based services

We commend CMS for including at ß 440.182(c) of the regulation the full set of services available under ß 1915(c)(4)(B) and ìother services requested by the agency and approved by the Secretary as consistent with the purpose of the benefit.î This standard creates equivalence between the ß 1915(c) and ß 1915(i) service options and provides states will a meaningful option to equally provide HCBS services through their state plan instead of through a waiver authority.

We also commend the allowance of FFP for room and board and pre-discharge services in certain specific situations where such funding is in keeping with the purpose of promoting HCBS services.

ß 441.530 Home and Community-Based Setting

NHeLP recognizes the difficulty in developing a working definition of ìintegrated settings,î and commends CMSí open process for defining the term in this regulation. We are aware of many instances where CMS included stakeholder input in developing the regulatory definition. For example, stakeholders widely recommended removal of the term ìcustodial careî in describing institutional care and CMS heeded this suggestion.

We believe CMSí iterative development of the term ìintegrated settingî with stakeholders has led to a better regulation with wider acceptance. NHeLP makes additional recommendations below to improve the regulation further.

Broadly speaking, NHeLP believes CMS cannot pursue a strict one-size-fits-all framework for defining integrated settings. We believe that there are significant differences ñ regarding health and support needs, demographic factors, and preferences ñ between the disability and aging communities. Even if some of these differences may not be inherent, they reflect the actual historical trajectories of how the supports for these communities have developed. We therefore recommend that CMS develop and strictly enforce a broad framework for integrated settings and implement a specific and limited exception for certain aging community purposes. Our recommendation can be summarized as:

1. CMS should implement a strict integrated setting definition and requirement for HCBS services.

2. There should be no exception (or, at most, an extremely limited ìrebuttable presumptionî) for persons with disabilities receiving HCBS services in other settings.

3. With respect to certain settings for older adults, a less strict exception allowing HCBS services in other settings should be allowed if special criteria are met.

If CMS does not adopt our recommended approach, then CMS must improve the broad framework it has proposed. CMS will need to tighten the exceptions process with respect to persons with disabilities, who should never (or only in the rarest of circumstances) receive HCBS services in a diagnosis specific setting or on an institutional campus. At the same time, CMS may need to ensure the rule does not block older adults from settings which the aging community considers to be of value.

CMSí broad framework of integrated characteristics and rebuttable presumption

NHeLP supports CMSí general approach of identifying the characteristics of integrated care and basing the regulatory definition on those characteristics. While we believe this approach does have the potential to capture the spirit of integrated care, we believe that CMS will need to take an active monitoring role to enforce the standards. More specifically, CMS will need to ensure that all of the individual pieces of the characteristic requirements are enforceable; if the characteristics become merely ìfactorsî in a ìtotality of the circumstancesî type of review, then the characteristics requirement will be eviscerated.

While we support the intent of the ìrebuttable presumptionî framework, we believe it is problematic. It is simply too weak a standard for the purposes of persons with disabilities. We believe the flexibility in the standard was largely designed to preserve access to some aging-related settings, which is why we have recommended a separate exception for the aging community. (CMS could also address this through a two-level rebuttable presumption; one very strong presumption in the disability context, and a lower one in the aging context). If the aging population has a separate exceptions process, the rebuttable presumption could be eliminated. In any case, if the rebuttable presumption remains, and is applied to persons with disabilities, the burden of proof for rebutting the presumption must be extremely high and met only in extraordinary circumstances. Furthermore, for any rebuttable presumption, CMS would need to establish clear standards and actively monitor around rebuttable presumptions to ensure that the exception does not swallow the rule. We note that large institutional settings in states may sometimes have important economic and political power at the local level which could surely influence the enforcement of this standard if CMS does not take an active role.

Since a setting must presumably be in compliance with the regulatory characteristics in ß 441.656(a)(1) to be considered integrated, it is unclear what additional evidence it would need to produce to meet the rebuttable presumption. CMS will need to provide further guidance on this. We recommend that, if CMS allows a rebuttable presumption, CMS require at least the following two conditions be met:

1. The setting should have a higher burden of proof ñ such as ìclear and convincingî evidence of compliance ñ with respect to satisfaction of all of the integration characteristics listed in the regulation.

2. We consider that the problematic physical attributes of some settings particularly threaten the community integration characteristic expressed in the regulation at ß 441.656(a)(1)(i). Therefore, we recommend that any setting with one of the physical attributes described in ß 441.656(a)(2)(v), which is over a certain size (definition to be determined by CMS), which is of a certain type (definition to be determined by CMS), or which is diagnosis/disability specific, must develop a publicly available community integration plan and document compliance with it, including compilation of complaints filed by individuals related to community integration or to the plan.

We urge CMS to be especially strict in allowing exceptions to settings with the physical attributes described in ß 441.656(a)(2)(v) and diagnosis/disability specific settings. We believe these settings bear the hallmarks of institutionalization and consider that for persons with disabilities they could be determined as ìintegratedî only in the most exceptional circumstances. We implore CMS to recognize that participation of these settings in HCBS programs will stunt the development of new or innovative infrastructure to meet the residential and support needs of current and future generations of persons with disabilities. Individuals with disabilities often have no truly integrated setting available to them, and the rule will perpetuate this unjust reality if, for example, cheap diagnosis-specific housing in remote areas remains a viable infrastructure option.

We also make the following recommendations:

* That housing should not be conditioned upon acceptance of services. For a setting to be community-based, the owner or operator of the setting cannot evict a person because he or she refused to accept a particular service.

* That board and care homes for persons with disabilities should be added to the list of prohibited settings in ßß 441.530(a)(2) and 441.656(a)(2).

Exception for aging settings meeting special criteria

Although we have recommended that CMS strictly guard the spirit of integrated settings as a general policy, we consider that CMS should develop a specific and limited exception for special aging settings (SAS) which meet special criteria of demonstrated value to the aging community. For example, certain assisted living facilities, continuing care retirement communities, or Section 202 housing may be acceptable places for older adults to receive HCBS. We believe the interactions between the aging community and SAS are simply too different to be governed by the same general framework we have recommended above. To be clear, we are not suggesting a broad exception for all entities self-identifying or designated with a particular moniker such as SAS, ALF, or CCRC. Instead, we recommend an exception for some such entities, as applied to older adults, which meet the requirements of the regulation at ßß 441.656(a)(1), (a)(2)(ii), (a)(2)(iii), and (a)(2)(iv), and also meet the special criteria (described below) which  make these SAS valuable.

Although the aging community has vast commonalities with the disability community, there is greater precedent and greater demand within the aging community to live in population-specific and/or campus-like settings, and more potential disruption if these settings are completely excluded. More importantly, we believe that while individuals with nearly every functional status are present in both groups, they are present in very different proportions. The aging population has certain functional status and prognosis trends, and related preferences, which are near universal in that population, while they are only sporadically present in the diverse disability community:

* The aging HCBS population includes many individuals with a very predictable and declining long-term prognosis in terms of health and functional status, based on the universal and predictable process of aging.

* At the same time, the aging HCBS population includes many individuals who have short-term and/or repeated fluctuations in level of care need; these fluctuations may have quick-onsets requiring fast transitions and may require short to middle-term shifts in setting.

* The aging population also has many individuals with significant health needs, in addition to functional needs, and cognitive impairments who cannot practically live safely in a home environment or maximize their function there.

Well-designed SAS settings, while not technically integrated under the general definition we have recommended (and thus not appropriate for persons with disabilities  generally), can be beneficial to older adults by addressing the prevailing population needs described above if they meet special criteria:

* SAS can allow older adults to age in place over many years by having multiple level of care settings within one complex.

* SAS can address rapid changes or declines and short term level of care transitions with setting-specific flexibility.

* SAS can provide a safe setting for older adults, such as those with advanced dementia, who do not feel capable of maintaining a residence, can only achieve maximum function in a supported setting, and/or would otherwise be forced into institutional settings.

We believe that SAS, by offering the benefits of the above criteria, offer older adults a stable and valuable setting option in spite of the institutional traits of the settings. We therefore recommend that CMS develop an exception to the general framework for integrated settings to allow inclusion of SAS for aging populations, under certain circumstances. Specifically, with respect to older adults, we recommend some allowance for exceptions to the general presumptions concerning physical attributes of setting, size, diagnosis/disability specific settings, and housing conditioned upon acceptance of services, if the setting can show that it clearly meets one of the special criteria mentioned above. However, this will require CMS to develop some standards to evaluate whether a SAS is truly providing an experience that is non-institutional. We would urge CMS to require such settings to develop a publicly available community integration plan and document compliance with it, including compilation of complaints and comments filed by individuals related to community integration or the plan. Of critical importance is that the SAS define community integration to refer to the greater community, and offer residents the opportunity to integrate with a community that is broad than the resident population.

CMS enforcement of integrated setting standards

Some states have a checkered history of complicity in the unnecessary institutionalization of older adults and persons with disabilities. We therefore believe that if CMS intends to allow states to certify which settings are integrated, and enforce the framework of this regulation (and in particular, adjudicate ìrebuttable presumptionsî), then CMS must take an active role in monitoring state determinations and policy enforcement. States face a combination of economic, political and governance pressures which make them susceptible to powerful forces that represent institutional care and/or have a vested interest in a status quo of institutional infrastructure. We recommend, therefore, that the regulation include robust provisions describing how state standards and processes will be developed by states, approved by CMS (critical standards, such as those used to evaluate exceptions to the rebuttable presumption, should be included in state plans and subject to CMS approval), and reported to CMS and publicly. Furthermore, the regulation must specify how CMS will act upon reported information and independently monitor to enforce the requirements of this regulation.

We recommend that CMSí monitoring of states include random sampling to verify state compliance with requirements around integrated settings.

ß 441.530(a)(1)(ii)

This paragraph does not address settings characteristics and perhaps belongs in the requirements for the individual service plan in ß441.665. If left in this section, the language should relate more clearly to a facility-wide characteristic, such as ìAll residents have selected this setting from a meaningful choice of alternatives, including the most integrated setting appropriate for each resident.î The regulation should clarify that the fact an individual has chosen a setting does not in and of itself confer ìintegratedî status on the setting.

ß 441.530(a)(1)(iii)

NHeLP recommends CMS remove the term ìessential,î as it could be read by a facility or others to limit the scope of personal rights referenced by the regulation.

ß 441.530(a)(1)(iv)

NHeLP understands the term ìoptimizedî in this provision to refer to optimizing an individualís autonomy taking into account the individualís capacity. We would support such an interpretation. However, we are concerned the term could also refer to optimizing the institutionís promotion of autonomy, and we would not support such an interpretation. We suggest altering the term to read ìoptimized for the individualÖî

ß 441.530(a)(1)(v)

The word ìfacilitatedî establishes a week standard and should be replaced with ìmaximized.î

ß 441.530(a)(1)(vi)

NHeLP recommends that the service plan exception in this provision is overly broad in as much as it allows exceptions to ßß 441.530(a)(1)(vi)(A), (B)(2), (B)(3), (D), and (E).

Furthermore, while we recognize that individual safety may sometimes be a justifiable basis to limit individual rights, this exception threatens to make the rule meaningless; safety is such a broad and subjective concept that it can be used to shield almost any encroachment on rights. We urge CMS to develop a narrower framework for this exception and explicitly prohibit institutions using criteria linking limitations on rights to specific diagnoses or demographic factors. Limits on autonomy must be supported and based only on the individualís documentable needs.

We note the term ìanotherî in ß 441.530(a)(1)(vi) appears to be extraneous (and does not appear in ß 441.656(a)(1)(vi)).

We note that ß 441.530(a)(2)(iv) includes the term ìproviding long-term care servicesî while ß 441.656(a)(2)(iv) does not include the term. We do not believe it was CMSí

intent to exclude acute hospital settings from the prohibited list, so we recommend using the latter language at both cites.

ß 441.650óBasis and Purpose

NHeLP recommends that CMS delete the language ìwith disabilities or individuals who are elderly.î While we understand that the statutory title created in 2005 for ß 1915(i) included reference to ìelderly and disabled individuals,î this language is merely a title which is not given effect in the statute itself and which is very harmful to the function of ß 1915(i) as amended by the ACA. Eligibility for State plan HCBS is not limited to ìelderly and disabled individuals,î and instead has always been available broadly to ìindividuals eligible for medical assistance under the State plan.î ß 1915(i)(1). CMS restates this fact in the preamble to the proposed regulations: ìTo be eligible for the State plan HCBS benefit, an individual must be included in an eligibility group that is contained in the State plan.î 77 Fed. Reg. 26377. In accord, CMS specifically recognizes that children may be eligible: ìChildren included in eligibility groups under the State plan may meet the needs-based criteria and qualify for benefits under the State plan HCBS benefit.

Also, we note that the term ìdisabilityî already has numerous different meanings. Using this term in a potentially limiting way could be confusing and unfair to beneficiaries.

ß 441.656óState plan home and community-based services under the Act

For comments to ß 441.656(a), see our comments to the language in ß 441.530.

We assume this provision in subparts (b) and afterwards to be listing requirements for the ß 1915(i) option, but the regulation does not state this is the purpose of the list. This should be clarified.

We also believe there are two drafting errors the CMS should correct:

* Paragraph (d) references ì(b)(2),î which doesnít exist. We believe it should refer to (e)(2).

* Paragraph (e)(2)(ii) references ìß 440.182(b)î and we believe it should reference ß 440.182(c).