Re: Proposed Amendment to 18 NYCRR § 505.14 and 18 NYCRR § 505.28
The Downstate New York chapter of ADAPT submits these comments in opposition to the proposed amendments to 18 NYCRR § 505.14, related to personal care services (“PCS”), and 18 NYCRR § 505.28, related to consumer directed personal assistance services (“CDPAS”), which would implement recent statutory changes resulting from recommendations of the Medicaid Redesign Team II as adopted in the State Fiscal Year 2020-21 Enacted Budget and to make other conforming changes.
- We recognize that the DOH must update regulations in accordance with recent budget changes impacting statutory language, and that the DOH is limited in removing or modifying certain aspects of language. However, the DOH has the authority to interpret these budget changes in the broadest manner possible. We strongly urge the DOH to use the broadest definitions, in order to maximize access to PCS and CDPAS for the most number of eligible New York citizens as possible and minimize long-term healthcare costs to the State. The DOH should consider doing so in the following ways:
- Section 505.14(b): Budget language does not require the DOH to direct the physician’s order form be completed by an independent assessor that is not the consumer’s physician. The physician’s order and the provider-patient relationship are not mentioned within the budget language. We highly encourage the DOH to continue annual physician’s orders in the manner currently conducted, and to utilize an independent assessor for only those social and nursing assessment services explicitly outlined in the budget. Budget language requires the DOH to establish an independent assessor “to take over from local department of social services, Medicaid Managed Care providers, and Medicaid managed long term care plans performance of assessments and reassessments” and those which “determine individuals’ eligibility for Medicaid managed long term care plans.” Under this language, the DOH may reasonably utilize an independent assessor for initial Medicaid enrollment eligibility determinations, and initial assessments and reassessments conducted by LDSS, MMCOs and MLTCs. The budget language also discusses the responsibilities of the independent assessor as it relates to the social assessment and nursing assessment. These two assessments are held separate from the physician’s order within current statute, and should continue to be held separate.
- Sections 505.14(a)(3)(iv), (a)(9) and 505.28(b)(1), (b)(13), (c)8): Define “physical maneuvering” to include the worker maneuvering the environment, equipment, or consumer bodies in determining level of assistance with activities of daily living (ADLs). Anyone with a disability knows that caretaking involves much more than “physical maneuvering” of our bodies, and thus, excluding those with physical disabilities that need supervision or help setting up for tasks of daily living from coverage misses the mark. If this is not defined more broadly, disabled people who require assistance with things other than “physical maneuvering” will be denied care. This will result in the State having to incur additional medical costs that could have been avoided.
- Sections 505.14(a)(3)(iv), (a)(9) and 505.28(b)(1), (b)(13), (c)(8): We strongly encourage the DOH to expand the list of “tasks of daily living” used in the eligibility criteria that includes all ADLs, Instrumental ADLs (“IADLs”) and health-related tasks. It is our understanding that the DOH may be pulling the ADL lists from the Uniform Assessment System (UAS). Although we understand a proclivity toward standardizing these assessment processes, we strongly advise the DOH to consider a broader view of tasks of daily living that includes ADLs, IADLs, and health-related tasks. If the DOH does not include Level 1 Care/nutritional and environmental supports and IADLs in the tasks that determine eligibility, this will be a big disservice to people with disabilities and be a serious misunderstanding of what it means to be disabled. It will leave many in New York State without care, and subscribe to an outdated view of the disabled experience. The proposed eligibility criteria would eliminate other vital daily activities from consideration for need. These are activities that non-disabled people take for granted and are done to protect as well as promote better health. People with disabilities should be able to have the opportunity to also direct how these activities will be done with the assistance of a PCA when they require assistance with these activities. People have care needs that won’t emerge directly in the UAS, and we must utilize a comprehensive view of someone’s life when developing their plan of care. Social assessments should be used to take into account the environmental tasks (shopping, housekeeping, etc.) that we need CDPA assistance with throughout the day, and should NOT be used in a way that attempts to let the State decide our home care hours should be replaced with informal support.
- Sections 505.14(a)(3)(iv), (a)(9) and 505.28(b)(1), (b)(13), (c)(8): Authorizing services based on diagnosis is an out-dated, irresponsible and unethical method to conduct eligibility determinations for disability-related needs. We encourage the DOH to recognize the “need for supervision with at least one ADL” through the federally required person-centered planning approach without regard to diagnosis, and to view the listed diagnoses within the budget language as a minimum expectation. The Americans with Disabilities Act (ADA) requires individualized assessment without regard to diagnosis. Further, the NY State Plan Amendment (SPA) 77-41 requires nondiscrimination on the basis of disability in compliance with Section 504 of the Rehabilitation Act of 1973.
- It is our understanding that New York State receives an additional 6% funding from the Federal Government for complying with Community First Choice Option (“CFCO”) policies. The additional 6% federal funding is supposed to be added into our pre-existing home and community-based services in New York State and associated funding, as long as those existing programs continue to meet CFCO standards. Significantly, New York State has put 90% of the pre-existing CDPA under CFCO, yet proposed regulations do not provide the additional framework of services CFCO mandates. We remain concerned about whether the State meets federal code and guidance for CFCO, and how these statutory changes and new regulations may jeopardize the ability of New York State to comply with requirements for receiving these funds. We request that the DOH acknowledge and respond to the following concerns regarding how these proposed regulations do not meet or exceed CFCO requirements for which New York State continues to receive funds:
- Sections 505.14(a)(3)(iv), (a)(9) and 505.28(b)(1), (b)(13), (c)(8): Current proposed “tasks of daily living” used in eligibility criteria does not meet federal requirements. 42 U.S. Code § 1396n (k)(1)(A) requires that any State receiving CFCO funding “make available home and community-based attendant services and supports to eligible individuals, as needed, to assist in accomplishing activities of daily living, instrumental activities of daily living, and health-related tasks through hands-on assistance, supervision, or cueing.” Furthermore, the proposed regulation disregards the federal guideline set forth by CFCO, which specifically requires that IADLs/Level 1 care must be included. Please refer to pages 3-4 of the State Amendment Plan #13-0035 and page 17 of the CFCO Technical Guide by the Centers for Medicare and Medicaid Services (“CMS”). You will find that they highlight the mandate of both ADLs and IADLs services and that such services “are a means to maximize independence and integration in the community, preserve functioning and defer or eliminate the likelihood of future institutional placement”. We encourage the State to seriously consider these matters in order to avoid losing significant financial funding especially during these difficult times.
- Sections 505.14(a)(3)(iv), (a)(9) and 505.28(b)(1), (b)(13), (c)(8): Creating a higher eligibility criteria that differs based on “type of disability” violates CFCO. Pursuant to 42 U.S.C § 1396n(k), acceptance of CFCO funding mandates that home and community based services must be given in such a manner that is without regard to an individual’s “type or nature of disability, severity of disability”. Also reiterated on page 7 of the CFCO Technical Guide by CMS, “42 CFR 441.515 requires states to provide CFC to individuals on a statewide basis and in a manner that provides services and supports in the most integrated setting appropriate to the individual’s needs and without regard to the individual’s age, type or nature of disability, or the form of home and community-based attendant services and supports the individual needs to lead an independent life.” To avoid a federal violation and the forfeiting of significant federal funding, we strongly encourage that the New York State Legislature immediately enact legislation that repeals the section of the Health Budget Law that changes the eligibility criteria. (We are shortly issuing a letter to the Legislature regarding this topic.) We highly encourage the DOH to withhold issuance of regulation and/or implementation until this topic is further examined so as not to result in the loss of CFCO funding.
- Sections 505.14(b)(2)(iv) and 505.28(d)(4): We strongly oppose the increase in required safety assessments and the misuse of Olmstead v. LC. These proposed regulations added emphasis on the State being allowed to complete more “safety checks” to ensure we, people with disabilities, are “safe living in the community or whether we can be better served with other services,” especially for those receiving 12 or more hours of care. This, along with the Legislature’s misreference to the Olmstead decision, are very troubling. Specifically, the budget contains language that grants the DOH the power to adopt standards and assessment methods to verify if an individual’s need for Personal Care Services exceeds a specified level and “is capable of safely remaining in the community in accordance with the standards set forth in Olmstead v. LC by Zimring, 527 U.S. 581 (1999) and consider whether an individual is capable of safely remaining in the community.” We would like to make abundantly clear that Olmstead does not give the government the right to judge whether we are capable of “safely” living in the community, in fact it holds the opposite to that interpretation. Olmstead recognized that “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life” and that “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.” The initial and annual assessments already provide information to the State regarding the use of CDPAS and consumer’s ability to accept these rights and responsibilities. The budget language does not require additional safety checks; it merely authorizes the Commissioner of Health to adopt such provisions. Through the proposed regulations, clearly, what the State is attempting to do is reduce the number of people that utilize these services, either by denying services outright to those who don’t meet the now much higher standards of eligibility, or by giving the State the power to judge someone ‘better fit’ for an institution because of ‘safety reasons.’ Such completely upends the Olmstead decision. If these regulations are approved, this will take us back to an archaic time where people with disabilities were viewed as unable to exercise self-determination. We encourage the DOH to recognize that these redundant safety checks not only impose additional barriers to services and unnecessarily intrude upon the private life of disabled persons who have already proven their ability to live safely in the community and manage CDPAS, but more importantly, may go against Olmstead. By being enrolled in CDPAS, they have already proven their ability to live safely in the community. Access to PCS and CDPAS make disabled lives safer. Ability to hire adequate staff that we are comfortable with makes disabled lives easier. Thus, the State’s continued Medicaid reimbursement cuts and neglect to address the rapidly decreasing hourly wage without basic employment benefits such as 401k plans, medical coverage, dental coverage, sick leave and paid vacation time for PCS and CDPAS workers directly disrupt the safety of disabled persons. We urge the DOH to address the true issues that impact consumer’s safety by establishing, among other things, a CDPAS minimum wage at 150% of the regional minimum wage, providing employment benefits, and modifying the Medicaid reimbursement rate to fiscal intermediaries.
- In regards to SPA #20-0002, Section 4403-f of the public 17 health law and S. 7506B that both discuss a “uniform tasking tool” for hours of care determination: We greatly encourage the DOH to consult Home and Community Based Services (“HCBS”) consumers and advocates about this tool, to ensure that it accurately reflects our needs while not neglecting the multitude of ways in which a disability manifests itself. It is our understanding that the DOH may be using the UAS to try to “standardize” these sorts of assessments, and will use it to create a “uniform tasking tool” to help decide people with disabilities hours of care. To understand the breadth of how disability differs day to day, you have to have a relationship with the disabled person and hear from their experiences— it is not something that will be understood accurately by an algorithm alone. We are very worried about how much humanity will be removed from these processes, and what that will do to people with disabilities receiving these services long term. To the State these are just numbers and boxes to check off, but to us, people with disabilities who use home care assistance, it is entirely our shot at a decent quality of life. We strongly recommend that you consult consumers and disabled activists in constructing this tool, so it reflects the fact that everybody’s personal experience is unique and manifests differently, even within the same diagnosis. Taking into consideration the fact that the experience of each person with a disability is unique will comply with federal law and be cost efficient and effective for all of New York State’s citizens.
It goes without saying that denying people home care will leave them without adequate support in the community, which will inevitably lead to their health deteriorating and an increase in injuries. This will not only decrease the State’s citizens’ health and well-being but also increase healthcare costs for all New Yorkers.
We are asking the DOH to issue regulations that advocate for the right of people with disabilities to live in the community with the guarantee of services that keep us alive, healthy and active; a system that understands, respects and reflects that we, people with disabilities, know our bodies and our needs best; and an assessment process that is nuanced, concise, and puts our needs first. By providing for the health and well-being of people with disabilities, New York State and all its citizens also will benefit with lower public medical costs, more funds saved, and a healthier and more productive community. Remember, we, voters with disabilities, are the biggest minority group in New York State that anyone can enter at any point in their lives. Assuming we all live into old age, we will all become disabled someday. Therefore, services for the disabled should not be trivialized, cut, or misunderstood in the ways that they historically have been, because allocating resources to people with disabilities will only benefit society as a whole.
We strongly urge the DOH to rethink many of the proposed regulations to align with the principle that people with disabilities are in charge of their lives. In particular, consistent with the view that people with disabilities have a right to self-determination, CDPAS is a program that was developed and led by disabled people, for disabled people. It is crucial that the State acknowledges and respects that CDPAS belongs to people with disabilities. As such, all changes or modifications must include disabled people as a majority and the voice of New York State’s residents with disabilities voice in the community must form the final consensus. The State should facilitate an on-going workgroup of consumers with disabilities to help design and implement the services we need to not only survive but to live fully productive and healthy lives.
We would like to thank you for giving us the opportunity to share our concerns. During a time in which we have witnessed such advancement in social justice movements, we only hope that the DOH can help us move forward with a disability justice lens. We are willing to work with the State to help create regulations that respect and uphold the civil rights of disabled New Yorkers. Please do not hesitate to contact us at DNYADAPT@gmail.com.
Downstate New York ADAPT