Comments Re proposed regulations: HLT-28-20-00019-P

These comments are downloadable in full as a PDF file.

Ms. Katherine Ceroalo
Bureau of Program Counsel
Regulatory Affairs Unit
New York State Department of Health
Room 2438, Empire State Plaza Tower Building
Albany, NY 12237

Comments submitted electronically to
Comments Re proposed regulations HLT-28-20-00019-P

The Consumer Directed Personal Assistance Association of New York State (CDPAANYS) submits the following comments on proposed amendments to Personal Care Services (PCS) and Consumer-Directed Personal Assistance (CDPA) regulations within sections 18 NYCRR §505.14 and 18 NYCRR § 505.28 of Title XVIII, identified in the State Register as HLT-28-20-00019-P.

Several of the proposed amendments contradict existing federal and state laws and regulations that prevent service access discrimination based on an individual’s medical condition or diagnosis. The amendments also include a provision directing local departments of social services (LDSS) and managed care organizations (MCOs) to subject high needs CDPA applicants to an additional layer of assessment to determine if they can live safely in the community, which the legislature did not grant the commissioner of the Department of Health (DOH) the authority to do.

If implemented, these amendments will restrict access to services that enable people with physical disabilities live in their homes and communities by narrowing the scope of programmatic eligibility and imposing new financial investigations on Medicaid applicants seeking community-based long-term care services that delay enrollment. Contrary to their stated goal, these prospective changes would create new administrative, legal, and financial burdens to New York State and jeopardize the safety and freedom of Medicaid consumers in need of long-term care services. DOH should instead look to increase participation in PCS and CDPA to avoid costlier interventions down the line and honor the state’s Olmstead commitments.

As part of our mission to provide education and awareness about CDPA, we have reviewed the proposed regulatory changes and offer the following comments and recommendations based upon our expertise of CDPA. Except where otherwise noted, our comments are limited to provisions impacting CDPA, except where otherwise noted, as this is where our expertise lies.

Section 505.28(b)(1) – Definition of Activity of Daily Living
The proposed definition of an Activity of Daily Living (ADL) is inadequate for its intended purpose and not based on generally accepted, peer-reviewed indices.

It is our understanding that this definition is taken from the Uniform Assessment System (UAS) and we are sympathetic to the desire to maintain a consistent definition. However, because this definition will be relied upon for eligibility, something that was not intended in the construction of the UAS, the desire is unacceptable and insufficient.

This proposed definition excludes numerous activities that can and should be reasonably and accurately classified as an ADL. For instance, transferring is somehow only an ADL if it is “on to and off the toilet.” By the definition, if the consumer has grab bars and can transfer on to and off the toilet himself; but, requires assistance transferring into and out of bed, or into a vehicle, or any number of other places, it is no longer an ADL.
Similarly, the definition includes no reference to assistance with skilled medical tasks, such as wound care, catheterization, medication administration, or suctioning, to name a few. While the UAS may not capture these tasks as ADLs, it is not relevant. The UAS does capture these needs in other places, and for the purposes of the UAS, it is not relevant as to how they are classified, as long as they are captured. On the other hand, if this definition will determine whether or not someone who requires medication administration or assistance, transferring into and out of bed, or assistance with a ventilator is eligible for the service, the matter of classification becomes extraordinarily important. Therefore, in the Department’s attempt at consistency, it is sacrificing critical classification methods needed to ensure that everyone who requires services can receive them.
Further, the UAS is not a tool that experts in ADLs recognize as an index that is utilized for defining ADLs. According to experts and professionals consulted by CDPAANYS, the professionally accepted tools to define ADLs are the Katz Index, the physical self-maintenance scale, the Older Americans Resources and Services tool, and the Barthell Index. While the UAS may or may not utilize some or all of these tools, it is not recognized as a tool sufficient for defining and determining ADLs, disqualifying it for these purposes.
The Department should undertake an effort, using experts in the field, consumer stakeholders, and accepted indices to ensure that this definition is as accurate and precise as possible. This is not only critical, in that these decisions can be a matter of life and death, it is also required in the statute, since it will impact the consumer’s ability to live in the community, and the statute mandates that decisions be made in compliance with Olmstead v L.C. by Zimring.

Section 505.28(b)(4) – Definition of “consumer directed personal assistant”
CDPAANYS strongly supports the language updating the definition of “consumer directed personal assistant” (PA) to be consistent with current law. While the statute changed on this measure several years ago, the outdated regulations have led to confusion and inappropriate denials of care and PAs by county Local Districts of Social Services (LDSS), mainstream managed care plans and managed long-term care organizations (collectively, “MCOs” from here on), and fiscal intermediaries (FIs).

Section 505.28(b)(10) – Definition of “live-in 24-hour consumer directed personal assistance”
CDPAANYs notes that, consistent with our recommendation in the definition of ADL, this definition has an expanded definition of tasks and ADLs, which includes “transferring” regardless of location and assistance with home health or skilled nursing tasks.

CDPAANYS is also very supportive of the provisions that specify that a consumer’s PA must be able to receive, on a regular basis, five hours daily of uninterrupted sleep. However, we will note that this standard is insufficient, based on reimbursement, wages, and the standard established by the New York Court of Appeals, based on the Fair Labor Standards Act.

Specifically, PAs working a live-in 24-hour CDPA case must receive five hours of uninterrupted sleep, eight hours of sleep overall, and three one hour breaks where they are not required to remain on the premises and are actually relieved of their duties. If a PA does not receive this time, they must be reimbursed for it.
The regulatory standard for live-in 24-hour CDPA, and personal care in the relevant section, must reflect the actual legal standard as established in both Federal and State law and case law. MCOs and LDSSs cannot be allowed to provide authorizations that do not adequately provide services, leaving FIs and licensed home care service agencies (LHCSAs) to pay when the service authorizations are inadequate.

Section 505.28(b)(13) – Definition of “minimum needs requirements”
While the standard proposed in this section was agreed to in the budget, CDPAANYS notes several problems with it from both a financial and, more importantly, legal perspective. The proposed regulation is the definition of the cliche “pennywise and pound foolish.” It has long been established that consumers who receive personal care services do not actually cost the system more; but, instead, replace acute care costs, primarily hospitalization, with personal care costs. Nowhere is this more true than among those low-hour, low-intensity cases, where the amount of personal care, or in this case CDPA, is low enough to heavily offset resulting hospital and other acute medical expenses Medicaid would have to pay. In this way, the proposed rule is in direct opposition to the Department’s goals, implemented with billions of dollars in support, of avoiding Potentially Preventable Readmissions, or in this case, admissions.

Not only is this penny-wise and pound foolish on the front-end, it ignores the steeper costs the state will face long-term by not providing low-intensity services to begin with. An individual with severe arthritis may not meet the ADL threshold established here. However, instead of providing a low number of hours to ensure basic needs are met, the Department would see this individual decompensate. Again, citing the United Hospital Fund’s Medicaid Institute, low-intensity cases in personal care cost on average $1,500/month, while high-intensity cases cost on average $4,000/month. Therefore, by delaying eligibility for services, the Department is increasing potential expenditures by an average of $30,000/year/consumer, without adjusting for inflation.
In addition to being fiscally irresponsible on a micro- level, the proposed rule jeopardizes hundreds of millions in enhanced Federal Medical Assistance Percentages (FMAP) funding under the Community First Choice Option (CFCO). CFCO was established in the Affordable Care Act and provides the state with an additional 6% FMAP for community-based services, including CDPA and personal care, for individuals who are nursing home eligible.
The Federal government established programmatic rules in exchange for the higher FMAP. 42 CFR §441.515 establishes the Statewideness requirements for CFCO and states that CFCO services must be provided to individuals “…without regard to the individual’s age, type or nature of disability, severity of disability, or the form of home and community-based attendant services and supports that the individual requires to lead an independent life.”

Because the statute and regulations clearly establish one level of eligibility for Alzheimer’s disease and dementia, and a secondary level of eligibility for all other disabilities, they are in clear violation of this Federal standard and cannot be adopted without sacrificing hundreds of millions in annualized revenues from the additional FMAP under CFCO.

505.28(b)(15) – Definition of self-directing consumer
CDPAANYS strongly supports the changes to this definition. While we firmly believe that CDPA should be available to everyone who is appropriate for the service, appropriate is a critical word. CDPA can be dangerous if individuals are not capable of adequately self-directing their services, or do not have an appropriate designated representative. By further defining what is meant by “self-directing consumer” to specify that they are capable of instructing, supervising, managing and directing consumer directed personal assistants and performing all other consumer responsibilities identified in this section,” the Department is taking a valuable step in protecting the integrity of the program and those Medicaid recipients who opt to become consumers.
We encourage the Department to go one step further to fully protect consumers. Current regulations state a consumer is self-directing if she is capable of “making choices regarding the consumer’s activities of daily living and the type, quality and management of his or her consumer directed personal assistance…” It would be appropriate to specify the plan of care in this sentence, as it could be inferred from “consumer directed personal assistance;” but, is open to interpretation.

505.28(c)(8) – Addition of minimum needs requirements in eligibility
As stated above, the minimum needs requirements, as defined in statute and these draft regulations, violate Federal law. Therefore, this proposed language must be struck.

505.28(d) – Assessment process
The changes to the assessment process are confounding and create a number of areas where CDPAANYS is supportive, many where we have significant concerns, and one which, like the minimum needs requirements, violates Federal CFCO requirements.

The current assessment process is flawed. In many instances, consumers are provided the UAS twice in as little as a week. If a Medicaid recipient wishes to consider different MCOs, he may be assessed even more often.
Since the UAS is a standardized form, this makes no sense, and CDPAANYS commends the Department for seeking to minimize the number of times an individual must submit to the UAS.

CDPAANYS also recognizes that we have long-sought the removal of the assessment and authorization process from MCOs, as it is our maintenance that these entities have a financial incentive to authorize as few hours as possible in order to maximize profit. Indeed, those companies like Centene (Fidelis) that are publicly-listed have a fiduciary responsibility to their shareholders to provide authorizations for as few hours as possible, and we have long cited evidence that these plans unjustly under-authorize or cut authorizations.

Unfortunately, the process proposed, while there are glimmers of hope, does not resolve the problems that CDPAANYS and other advocates have long identified in a way that resolves the worst of them in a manner that is beneficial to the consumer, the state, or, anyone really other than Maximus or the ultimate contractor hired to perform these assessments.

505.28(b)(1) – Independent Assessment
As previously stated, CDPAANYS has long advocated removing the assessment and authorization process from MCOs, as they have inherent financial conflicts of interest. We also support processes that prevent redundant assessments, which currently take place as the Conflict Free Evaluation and Enrollment Center (CFEEC) and the MCO both complete the UAS in a matter of days.

Therefore, it is in keeping with this advocacy that we are pleased to see the independent assessment itself done by an outside agency. However, we do have some concerns about how this measure is implemented.
In 505.28(d)(1)(ii)(b), the regulations propose that the independent assessor discuss with the individual his or her perception of his or her circumstances and preferences. This language is carried over from existing regulation; however, given Federal requirements centered on person-centered service planning, it should be expanded to clarify what is meant by preferences. CDPA is a service that exists in the community, and is intended to ensure that, when desired, individuals can remain vital parts of their community. Preferences should be more specific to include preferences on service delivery; but, also preferences on what those services allow an individual to do. For instance, if an individual wishes to go to school or work, they will require certain adjustments to their plan of care that will not be necessary if they were primarily staying home. Too often, the assessment process does not capture these important preferences, which are critical to the intent of community-based services and person-centered service planning.

In 505.28(d)(1)((ii)(c), the Department carries over existing regulations on informal supports. However, (c)(5) has always only spoken to the acceptability to the individual being assessed on the informal supports involvement in his or her care. In other areas of these regulations, informal supports are addressed and the acceptability language is different or not included at all.

Federal law requires that informal supports be voluntarily provided and received. The regulations should be modified so that each reference to informal supports specifies that such services are to be voluntarily offered by the friends or family, and voluntarily accepted by the consumer. CDPAANYS has received reports from consumers over the years where such supports were no assumed, and the voluntary nature was not considered, resulting in the need to appeal. To protect consumers’ rights and avoid these unnecessary appeals and fair hearings, this regulation should be clarified.
505.28(d)(2) – Independent medical exam and physician order.
CDPAANYS understands and offers qualified support for streamlining the independent assessment; however, we cannot fathom why the Department would seek to take medical exams out of the hands of health care providers that have a relationship and deep understanding on the needs of their patients in order to pay a third-party entity to perform these exams.

The doctor/patient relationship is such that the Medicaid Redesign Team’s Long-Term Care Advisory Committee specifically noted that the relationship between a consumer and his or her doctor should not be interrupted, and, while not in the final report, non-state members overwhelmingly suggested expanding those relationships to include specialists and other providers who may have a deeper understanding of the consumer’s condition.
This language goes the other way entirely. Not only does it require an interruption in this relationship, the language in (d)(2)(v) does not even require that the independent medical professional review the individual’s medical records or consult with these providers. As a matter of fact, the proposed regulation completely removes mandatory consideration of the consumer’s medical history.

The proposed regulations are also limited because of their lack of any clear limits as to how long consumers can be forced to wait for an appointment from the independent medical assessor. Shifting hundreds of thousands of individuals to one entity for an initial assessment, and then reassessments, even if annually instead of every six months, has a very likely result of creating excessive delays for those who are seeking to access critically needed services.

Currently, if an individual does not receive their medical assessment in a timely manner, that is a matter between that individual and their doctor. By taking on contracting for the independent medical assessment, the contractor, and indirectly the state, are assuming responsibility, and liability, for delays. Even if just to meet Federal Medicaid requirements, these rules must implement timelines for the provision of a medical assessment.
CDPAANYS has deep concerns about any effort that interferes in the sacrosanct doctor/patient relationship. This provision not only interfere in this relationship, they undo a decade’s worth of policy measures aimed at streamlining the Medicaid system.

It should be noted that CDPAANYS was glad to see language strengthening requirements to determine an individual’s ability to self-direct, consistent with the definition outlined above. However, the independent medical examination is not needed to perform this service, as it is better located in the independent assessment. A nurse, social worker, or other professional is often much more qualified to perform this evaluation than a doctor, and the assessment provides the individual making such a determination more information about whether or not the individual meets the criteria for this term, a determination that is, in many aspects, not a medical one.

505.28(d)(3) – Social services district or MMCO responsibilities
Attempts to streamline the assessment process, as previously noted, have long been encouraged by CDPAANYS; however, we are discouraged that this process still leaves authorizations, which, like the assessment, the plan has a financial incentive to manipulate. Further, more must be done to streamline the process, by removing plans’, and LDSS’, ability to conduct unnecessary and redundant assessments.
CDPAANYS strongly supports the language in (3)(i) that requires the MMCO or LDSS to coordinate with the independent assessment entity to “minimize the individual’s disruption and in-home visits.” However, we question why, in (3)(ii), the plan is then authorized to “evaluate” the individual to ascertain facts that were considered by the independent assessor. All of the items the LDSS or MCO would evaluate in (a) thru (h) of (d)(3)(ii) are evaluated by the independent assessor during the assessment process. This level of redundancy is not only a waste of time for the consumer, it is a waste of financial resources for the LDSS/MCO and thereby the State. It provides no additional value, and only provides the LDSS or MCO, the latter of which has a financial stake in providing fewer services, the opportunity to interrupt, delay, or illegitimately cut the consumer’s services.
It is possible for the MCO or LDSS to receive an assessment from a third party and subsequently develop the plan of care, as today many MCOs contract out the assessment process to third party home care agencies, nursing agencies, or others. The plan receives the assessment from this contracted party and develops a plan of care without further evaluation of the consumer. There is no reason that this cannot continue with the Independent Assessor.

CDPAANYS also notes in particular that the addition of assisted living programs (ALPs) and enriched housing to the list of alternative services that must be considered in (d)(3)(ii)(d), and which must be utilized if it is determined to be more efficient, is a violation of Olmstead vL.C. by Zimring. Many ALPs in particular are merely wings or buildings in a nursing home that have received a different name and have lower staffing levels. These facilities do not exist in the community, as such term is defined in Federal regulations. They are not in the current list of alternative services in 18 NYCRR 505.28 and should be excluded from this new list.

In 505.28(d)(3)(ii)(h), we note again the inconsistency in language surrounding informal supports. If this language is to remain, as MCOs and LDSSs evaluate services, separate and apart from the independent assessor, it must be made clear to them that informal supports must be voluntary not just on the part of the informal caregiver; but, also the consumer. We know from conversations with consumers that exorbitant amounts of pressure are often applied, and the language as it stands would in fact allow a plan to decrease hours because a consumer refused to allow a family member or friend to be an informal caregiver.

In 505.28(d)(3)(iv) and (v), we are again pleased that these regulations mention the requirement that an individual have sleeping quarters for live-in services. We are also pleased that they carry over the language requiring five hours of uninterrupted sleep. However, we again note that this is not the standard that was established by the Court of Appeals. The new regulations should properly lay out the standards by which 24-hour live-in services are to be authorized, as determined by the Court. This includes 5 hours of uninterrupted sleep, 8 hours of total sleep, and three one hour breaks where the individual can be fully relieved of his or her duties with no expectation of work. If an authorization for 24-hour live-in services cannot be reasonably expected to meet this standard established by the Court, continuous care must be authorized.

505.14(b)(2)(iv) and 505.28(d)(4) – Independent Medical Review Process

The additional assessment process for high needs cases, those with an authorization that averages twelve or more hours per day, called the independent medical review. A high needs consumer would be subject to an independent medical review by a panel of physicians who would then recommend to the MCO or LDSS whether or not the consumer could safely receive services in their home according to their plan of care.

We maintain that the statute, Social Services Law 365-f, does not afford the Department of Health the authority to impose this review in CDPA, as per the New York Rules of Statutory Construction.

Changes were made to both personal care services, governed by Section 365-a of the Social Services law, and CDPA, governed by section 365-f of the Social Services Law. When these changes take effect on October 1, 2020, 365-a will read as follows:

(ii) the commissioner is authorized to adopt standards, pursuant to emergency regulation, for the provision and management of services available under this paragraph for individuals whose need for such services exceeds a specified level to be determined by the commissioner, and who with the provision of such services is capable of safely remaining in the community in accordance with the standards set forth in Olmstead v. LC by Zimring, 527 US 581 (1999) and consider whether an individual is capable of safely remaining in the community; (emphasis added)

The relevant portion of Social Services law 365-f will read as follows on October 1, 2020:
(a) is eligible for long term care and services provided by a certified home health agency, long term home health care program or AIDS home care program authorized pursuant to article thirty-six of the public health law, or is eligible for personal care services provided pursuant to this article, and who with the provision of such services is capable of safely remaining in the community in accordance with the standards set forth in Olmstead v. LC by Zimring, 527 US 581 (1999) and consider whether an individual is capable of safely remaining in the community;

Notably, the language in Social Services law 365-f does not include the clause that authorizes the commissioner to provide an extra level of review for cases which exceed a “specified level.” Further, while 365-f specifies “eligibility” for personal care as a qualification for service; but, the referenced section of 365-a speaks not to eligibility but the “provision, management, and assessment” of services.

The New York Rules of Statutory Construction are clear on this. Language that is added or subtracted creates a meaningful change in the interpretation, and if that language is not the same, it cannot be interpreted to mean the same thing. Since the legislature specifically changed the PCS law to account for assessments and allow the DOH commissioner to create these new standards for personal care; but did not include that same language in CDPA, the Department lacks the legislative authorization to implement this control.

If this were not enough, the high needs review for cases over twelve hours, like the minimum needs requirements, violates the State’s obligations under CFCO. As noted in the section discussing the minimum needs requirements, the high needs review violates the Statewideness clause of CFCO. Federal regulations on CFCO require that eligibility be determined “…without regard to the individual’s…severity of disability…”

The high needs review established under this section clearly establishes a differential level of review based on the severity of disability, as the number of hours authorized is a clear indicator of such severity. Therefore, even as the Rules of Statutory Construction prohibit the implementation of the high needs review in CDPA, CFCO prohibits its implementation in CDPA and personal care.

There is also no clinical research indicating that an individual is decidedly less safe in the community when they reach an arbitrarily specified level of service authorization. Therefore, without clinical evidence, there is nothing suggesting that individuals with an average of eleven hours per day of service are adequately served by the safety review conducted by the independent assessor, the medical assessment, and the LDSS or MCO while the individual with twelve hours of service authorization is not. Since the State will not be able to achieve financial savings by paying a third party to conduct these reviews and consistently authorizing more service, this must be viewed as just another barrier to receipt of service. At its worst, it could also be viewed as a disincentive for LDSS’ or MCOs to authorize twelve or more hours, and/or a disincentive for consumers to seek more than twelve hours of service.

The Department did inform CDPAANYS that this was not their intent, and that they instead wished to ensure that MCOs and LDSS’ adequately provide for the hours required by consumers. We laud this goal; but, note that this is an inadequate means of achieving that goal. Instead, the Department should work with advocates to identify mechanisms, such as routine audits of assessments and authorizations to name one, that will seek to ensure plans are not under-authorizing hours, particularly for those at the upper-end of the need continuum. We and other senior and disability advocates would be thrilled to work with the Department on such measures.

505.28(e) – Authorization Process

CDPAANYS respects the desire of the Department to protect Medicaid resources for those who qualify; however, we note that the standard established in 505.28(e)(1)(i) is a violation of the rules under Olmstead v L.C. by Zimring. The sub-paragraph requires that an individual complete the entire Medicaid eligibility process, including financial lookback, prior to the authorization of services. However, in an institutional setting, individuals routinely receive nursing home services while the financial lookback occurs, with Medicaid reimbursing retroactively if the individual is determined eligible, and a bill being submitted for private-pay if such the individual is found to have excessive financial resources to qualify.

While the statute states that individuals may utilize CDPA or personal care services on a private-pay basis and be reimbursed, this ignores several realities. First, even if this were possible, this provision in fact excludes those who are most likely to not face penalty through the lookback. If you do not have significant financial resources, you cannot afford private pay personal care. That is the reason the individual is applying for Medicaid. Ironically, the individual who is likely to have too great assets to qualify for Medicaid is the one who could afford this theoretical allowance.

But, this brings us to the second problem with this clause. It is theoretical only. CDPA does not exist outside of Medicaid, so there is no way for an individual to private pay for it. Even if there was, such as is the case with personal care, there is not an authorization, a plan of care, or a qualification of hours. There is nothing to inform the FI, or LHCSA, of how many hours to provide, the services to provide, or how they should be retroactively reimbursed.

Since this is not a real benefit, to comply with the requirements of Olmstead v L.C. by Zimring, the Department must make available a mechanism for consumers to attest to their resources and receive services, with a lien or other mechanism existing in the event that they are found to have hidden or sheltered resources or assets so that the State or MCO may be reimbursed. This will provide the level of parity required to ensure that an equal level of services are provided in the community as are available in the institution.

CDPAANYS is very happy to see the clarification in 505.28(e)(1)(v). This is an important measure that protects the State, LDSS’, MCOs, FIs, consumers, and PAs. As we previously noted in recommending this provision, LDSS’ and MCOs are currently providing authorizations to consumers through multiple FIs in order to attempt to skirt the Fair Labor Standards Act and overtime provisions. However, since the consumer is in fact an employer or joint-employer, this scheme ignores the fact that the PA is owed overtime no matter what if he or she works over 40 hours. Often, the FI is not even aware that the case is shared, opening an opportunity for fraud on behalf of the consumer and PA if they choose to submit the same hours to both FIs. Further, it complicates matters by drawing into question who owes the PA overtime. By clarifying that a consumer may only work with one FI, this question is eliminated and the integrity of labor laws are protected.

CDPAANYS is also very excited that our recommendation to extend the authorization period from six months to twelve months has been adopted in 505.28(e)(4). Given that consumers must have long-term, stable medical conditions this extension is merited and will save the State a significant amount of money. Given that processes exist to allow the LDSS or MCO, or the consumer, to conduct a new assessment if the medical condition or status changes during the period, any concerns should be alleviated.

We do note that, in 505.28(e)(8), the timelines that MCOs must make determinations and provide notice should not be provided in the contract; but, regulations. Contracts do not have the same level of public input or transparency as the regulatory process. Given numerous recent Court decisions that note the imperative of the State’s need to abide by the regulatory process laid out in the State Administrative Procedures Act (SAPA), we are disturbed by this attempt to short circuit that Legislatively required process and delegate it to the contractual process. Any deadlines or terms highlighted in the contracts must be laid out in the regulations, with the contract following the regulatory framework to ensure public accountability.

505.28(f) – Reassessment and reauthorization processes.

CDPAANYS strongly supports the changes to 505.28(f)(2)(ii) that further clarifies when a reassessment may require a new analysis of the consumer’s ability to self-direct his or her services; however, we reiterate that the medical assessment is the improper place for this analysis to be done. As CDPA becomes more popular, FIs are seeing more individuals with dementia, Alzheimer’s Disease, or other disabilities that can impact their ability to self-direct their services.

However, we do note that this provision should be expanded to have the LDSS or MCO be required to attempt to work with the consumer, or his or her proxy or legal guardian, to identify a Designated Representative in an attempt to maintain continuity of care.

505.28(g) – Consumer responsibilities.

CDPAANYS supports the requirements in 505.28(g)(2) that place additional levels of accountability of designated representatives and clarifies further the expectations that these individuals face. We do note that, while it is reasonable for a designated representative to have to be available for scheduled assessments or visits, that the Designated Representative shall be provided adequate notice and the ability to reasonably modify the timing of such appointments when they conflict with other professional, familial, or personal responsibilities in the same manner that a consumer may, so long as such delay does not interfere with the ability to maintain continuity of care.

For the same reasons outlined in our comments on 505.28(e)(1)(v), CDPAANYS strongly supports the clarification in 505.28(g)(3) that consumers and designated representatives may not work with more than one fiscal intermediary at a time. We note in particular that the addition of a designated representative here is critical, as a designated representative may be such for more than one consumer, which would then potentially expand joint employment liability if a PA worked for multiple consumers, even if such consumers were themselves with different FIs.

505.28(h) – Social Service District and MMCO responsibilities.

CDPAANYS notes that in 505.28(h)(2), the language should be amended to state, “…the fiscal intermediary’s notification to the district or MMCO pursuant to….” Based upon the New York Rules of Statutory Construction, failure to make this addition here would exempt MCOs from this requirement.

CDPAANYS is concerned by the subtle shift in language in 505.28(h)(4) that changes the MCO or LDSS responsibility to provide notice to consumers notice of authorization, reauthorization, increase, reduction, discontinuance, or denial of services on forms developed and provided by the Department. Current regulatory language dictates such notice must be provided “on forms required by the department.” The new language states that “the Department of Health may require the use of forms it develops…”

Given the extensive evidence provided by advocates of plans providing insufficient notice and evidence under the current regulation, the weakening of these regulations is deeply disconcerting. The allowance of LDSS’ and MCOs to develop their own notices would result in a myriad of notices, each with their own language and terminology, that will inevitably confuse consumers and designated representatives and lead to problems with the appeals and fair hearing process. Since so much of this notice and overall process has been determined by case law, it follows that the Department cannot delegate this responsibility to a third party.

Further, in 505.28(h)(4)(i)(i) and (4)(ii)(h), CDPAANYS once again reiterates our position that language regarding informal supports must be uniform and consistent throughout the regulations. It is critical, particularly on a notice of denial or reduction of service, that consumers and/or designated representatives be made aware of the fact that informal supports must be voluntary on behalf of the consumer and the individual providing such supports.

CDPAANYS also notes that social service district and MCO responsibilities should be expanded to include the responsibility of the LDSS or MCO to inform the FI, if applicable, of any designated representative that may exist. CDPAANYS is aware that, in many instances, FIs are not informed of designated representatives, which leads to compliance issues as the FI seeks to ensure that PAs are not also designated representatives, that time records are signed by the proper individuals, and that communications are going to the proper individual.

505.28(k) Immediate need.

CDPAANYS notes that the provisions to allow services during the financial lookback period, established in 505.28(k), are insufficient to address concerns about compliance with Olmstead v L.C. by Zimring, previously highlighted above. The standard for immediate need services is greater than that which exists for individuals receiving services in a nursing facility or other institution. Therefore, because this presents a higher bar for services in the community versus institutional services, it does not meet the requirements of Olmstead.

CDPAANYS appreciates the opportunity to comment on these regulations and welcomes any questions regarding our concerns.