DNY ADAPT’s Official Commentary to NYS Health Committees

September 14​ , 2020

To the Health Committees of the NYS Senate and Assembly:

The Downstate New York Chapter of ADAPT has grave concerns regarding the recent Health Budget Law (​S. 7506-B; A. 9506-B​). ​We are writing not only to make you aware of our members’ concerns, but to request a meeting on Zoom with Senator Rivera, Assemblyperson Gottfried, and concerned members of the State Assembly and Senate. It is our understanding that there is a period in which the State can re-evaluate the budget, thus, we request a meeting prior to September 30th, 2020 to discuss what aspects of the law need to be changed in order to prevent the State from losing federal funding.

Recently, changes were made to the Health Budget Law (​S. 7506-B; A. 9506-B​)​ that would drastically limit the eligibility criteria for home and community based services for the disabled in New York State, including both Personal Care Services (“PCS”) and Consumer Directed Personal Assistance Services (“CDPAS”). The New York State Department of Health (“DOH”) released their ​proposed regulations​ that would implement the recent changes set forth in the Health Budget Law. On September 13th, 2020, we submitted our comments to the DOH regarding their proposed regulations, and now we are writing to you to warn you against implementing​ Section 365-a​ and ​Section 365-f​ of New York State’s Social Services Law, as recently amended.

Typically, one is eligible for home care once on Medicaid when you have a physician diagnosed disability and need ​”personal care services”, which are CURRENTLY defined in New York State’s regulations as needing assistance with tasks like​ showering, changing beds, preparing meals, grooming, and more. Yet,​ Section 365-a​ and ​Section 365-f​ now dictate that people with physical disabilities must need help with ‘physical maneuvering’ for at least 3 Activities of Daily Living (“ADL”), whereas people with an Alzheimer’s diagnosis must need ‘supervision’ with at least 2 ADLs to be eligible for home care. It is our understanding that ​Assembly Bill A10486 proposes people with traumatic brain injuries, developmental disabilities, cognitive disabilities, and blindness or visual impairment meet the same criteria as people with Alzheimers, but has not yet passed through the state legislature. Additionally, Part MM (page 271, line 34) of ​the Budget Law​ strikes out our right to be notified of the availability of CDPA. ​We are writing to the State’s Health Committees to strongly urge repeal of these sections for several reasons as set forth herein.

First, it seems that these changes made to State laws addressing PCS and CDPAS (as well as the DOH’s proposed regulations) will violate the federal Community First Choice Option (“CFCO”) policies.​ It is our understanding that New York State receives an additional 6% funding from the Federal Government for complying with CFCO policies. The additional 6% federal funding is supposed to be added into people with disabilities’ pre-existing home and community-based services in New York State and associated funding, as long as those existing State programs continue to meet CFCO standards. New York State has put 90% of the pre-existing CDPAS under CFCO, yet does not offer all CFCO services and now have to comply with new State law that does not adhere to the framework of services CFCO mandates. We remain concerned about whether the State meets federal code and guidance for CFCO, and how the newly passed law may disqualify New York State from continuing to receive this additional 6% federal funding. ​We strongly urge the State to enact legislation that repeals the section of the Health Budget Law that changes the eligibility criteria in order to avoid not being in compliance with CFCO. The State laws recently amended violate Federal guidelines in several ways, including:

  1. Creating a higher eligibility criteria that differs based on “type of disability” (i.e. physical disabilities versus Alzheimer’s, ‘physical maneuvering’ versus ‘supervision’) 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, t​ ype or nature of disability, or the form of home and community-based attendant services and supports the individual needs to lead an independent life.”
  2. 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.”​ ​The new law would disregard federal guidelines set forth by CFCO, which states 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.
  3. According to the Special Terms and Conditions of the ​1115 Waiver​,​“The state shall ensure … that enrollees are afforded the option to select self-direction and enrollees are informed​ of CDPAP as a voluntary option”​ (page 33). Furthermore, the ​CFCO State Plan Amendment (SPA #13-35)​ promises to “fully inform individuals of all available choices and service options” and that the “Service Planning process of CFCO Participants will assure that individuals receive information…” (​Page 24​). To ensure compliance with these guidelines, we recommend that the Budget Law ​puts back ​the section regarding our right to be notified of the option for CDPA.

Second, these proposed changes will create an even further public health crisis.​ To put this in perspective, the proposed new eligibility criteria would eliminate IADLs from eligibility criteria (shopping, cooking, housekeeping, making beds, etc.), insist that “physical maneuvering” is the only valid form of caretaking for people with physical disabilities, and mandate that we must meet a certain number of tasks to be eligible. Creating stricter criteria to deny people home care will only leave them in the community without proper support, which would inevitably lead to deteriorating health and an increase in injuries. This would only decrease our health and well-being and, thus, increase healthcare costs long-term for all New Yorkers. ​Mandating that certain people must physically deteriorate to be eligible for life-saving services is inhumane, unethical, and short sighted. It is a public health crisis waiting to happen.

We implore the State to issue laws that advocate for​ the right of ​people with disabilities​ to live in the community with the guarantee of services that keep us alive, healthy, productive and active.​ We, voters with disabilities, are the biggest minority group in New York State that anyone can join at any point in their lives. Assuming we all live into old age, we will all become disabled someday. Therefore, services for people with disabilities 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, New York State’s citizens/voters/taxpayers, deserve to live with dignity and have peace of mind that services will be readily available for when we all begin to experience deteriorating health.

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 the disabled people​. As such, all changes or modifications must include people with disabilities as a majority, with our voices as 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, thrive, and lead fully productive and healthy lives.

In sum, in order to prevent the State’s forfeiting of significant federal funding due to a violation of federal law and a public health crisis that will result in an increase in medical costs, we strongly encourage the New York State Legislature to immediately enact legislation that repeals these portions of the Health Budget Law.

During a time in which we have witnessed such advancement in social justice movements, we only hope that the State’s Health Committees can help us move forward with a disability justice lens. Thus, we would like to schedule a​ mutually convenient time to meet virtually with you before September 30, 2020, to discuss our concerns further. Hopefully, we can work alongside you in implementing laws that respect and uphold the civil rights of disabled New Yorkers. From now until September 30th 2020, we are available for a zoom meeting Mondays before 2PM, Wednesdays between 11AM and 5PM, and Thursdays between 11AM and 3PM.

Please contact us at ​DNYADAPT@gmail.com​ or 646-709-2510 to schedule a time, or let us know of other dates and times that you are available. Thank you for all the great work you do for us.

Very Truly Yours,
Downstate New York ADAPT

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