2023 UPDATE - see directives issued Oct. 2023 here clarifying that a legal guardian may be a personal assistant in CDPAP if someone else is the "designated representative.
In 2020, NYS enacted restrictions on eligibility for CDPAP and personal care, requiring 2 or 3 Activities of Daily Living. As of February 2024 these changes are still not implemented because of the public health emergency. Also, new Independent Assessor procedures to assess the need for CDPAP, personal care, and MLTC enrollment started May 1, 2022. See more about these changes here.
The Consumer Directed Personal Assistance Program (CDPAP) is a statewide Medicaid program that provides an alternative way of receiving home care services, where the consumer has more control over who provides their care and how it is provided. Rather than assigning a home care vendor or agency that controls selection, training, and scheduling of aides, the "consumer" or the family member, friend or guardian directing his/her care performs all these functions usually done by a vendor. All counties - and now all mainstream Managed Care and Managed Long Term Care plans - are required to have a CDPAP program and notify “eligible individuals” of the option to join. Eligible individuals include those eligible for services provided by a certified home health agency, a long term home health care (waiver) program, AIDS home care program, or personal care (home attendant).
The consumer can hire almost anyone, including any family members except his or spouse. Since April 2016, because of a change in State law, parents of disabled ADULT children have been able to serve as CDPAP aide if they are not also the recipient's designated representative, and with restrictions on whether they may live with the consumer. See this article in Democrat & Chronicle, Nov. 25, 2015. Social Services Law §365-f, subd. 3, as amended by L. 2015 Ch. 511, enacting Senate bill S05712-A (Sen. Simcha Felder).
Before this change, spouses and parents could not be hired as the CDPAP aide. A son or daughter, son-in-law or daughter-in-law or any other family member could be the aides, provided the family member does "...not reside with the consumer or ... who resides with the consumer because the amount of care the consumer requires makes such relative's presence necessary...." 18 NYCRR 505.28(b)(3)(amended 2011 to allow adult children, and daughter-in-law and son-in-law to be aides). Now, only spouses are prohibited from being hired as the aides.
- STATE DIRECTIVES IMPLEMENTING NEW LAW: NYS DOH Issued a Medicaid Update (Vol. 32 No. 3, March 2016) and GIS 16 MA/006 - Changes to the Statute for the Consumer Directed Personal Assistance Program (CDPAP) PDF explaining the new law.
A "legally responsible" adult may not be the aide. Spouses are always legally responsible for their spouse. Parents are always legally responsible for their children under age 21. They may not be the CDPAP aide for those relatives.
A "designated representative" of a CDPAP consumer may not be the aide. State regulations state, "...With respect to a non self-directing consumer, a "designated representative" means the consumer's parent, legal guardian or, subject to the social services district's approval, a responsible adult surrogate who is willing and able to perform such responsibilities on the consumer's behalf. The designated representative may not be the consumer directed personal assistant or a fiscal intermediary employee, representative or affiliated person" 18 NYCRR 505.28(b)(5)
On Oct. 23, 2023, DOH clarified in two separate directives "that a court-appointed (legal) guardian, including a parent-guardian of an adult aged 21 or older, may serve as an adult individual’s CDPAP personal assistant provided they are not also the individual’s designated representative."
Immigrants must have a valid work authorization. The aide need not be "certified" - training is done by the consumer and family.
Another special benefit of CDPAP is that CDPAP aides may perform "skilled" care that otherwise may only be performed by a nurse - suctioning tracheostomies, insulin injections, administration of oxygen or medications where the consumer cannot self-administer. See N.Y. Educ. Law § 6908(1)(a) . Tasks that could not otherwise be performed by home health aides or personal care aides are indicated in the scope of tasks for personal care and home health aides.
4. Different Employment Model - Fiscal Intermediary vs. Home Care Agency
- Fiscal Intermediaries -- The aide is not an employee of a home care agency, but is instead an independent contractor, who is paid wages and benefits by a "fiscal intermediary," an entity that contracts with either the county or a managed care plan to provide services authorized by that county or managed care plan. It is the fiscal intermediary that pays the aide wages and benefits.
- Most but not all CDPAP fiscal intermediaries are members of CDPAANYS - see their online list statewide.
- In addition, individuals in NYC can choose from agencies on HRA's list - these are CDPAP vendor agencies contracted with HRA to provide fee-for-service CDPAP care. These agencies may also contract with managed care plans; individuals in managed care should confirm which CDPAP vendors their plans contract with.
5. ELIGIBILITY FOR CDPAP
Eligibility Criteria - 18 NYCRR Sec. 505.28(c)
Eligible for Medicaid
Eligible for personal care, certified home health care, private duty nursing, or AIDS or other waiver program
"have a stable medical condition" [NOTE: this is same definition as in personal care See Section 2 - Eligibility. But note that CDPAP aides may perform skilled tasks, unlike in personal care. In this way the definition of "stable medical condition" is different for CDPAP.
"be self-directing or, if non self-directing, have a designated representative"; See above for who may be designated representative.
WARNING about requirements that applicant need assistance with three ADLs (or 2 if diagnosed with dementia or Alzheimr's disease) - when state law changes go into effect later in 2024. See more here,
6. Who Authorizes CDPAP - Managed Care/MLTC Plan or local Medicaid agency (HRA or local DSS)
Here is how people with Medicaid only and those with Medicare and Medicaid access CDPAP. See NYC HRA MICSA Medicaid Alert dated Oct. 26, 2012 on CDPAP and Managed Care.
People with Medicaid Only (and do not have Medicare) - Most are already required to enroll in a Mainstream Medicaid Managed Care (MMC) plan. Members request their plans to authorize CDPAP services , as well as personal care services.
Managed Long Term Care (MLTC)-- Most adults who have both Medicaid AND Medicare are required to enroll in MLTC in order to obtain CDPAP,
There are some exceptions - excluded populations who may apply at local DSS (in OPWDD, hospice, etc.. see list at above link).
The MLTC or managed care plan that determines eligibility for CDPAP - assessing the consumer's or their representative's ability to direct and managed their own care. See Responsibilities of the Health Plan. It is not clear that MLTC plans (or mainstream MMC plans) are required to use the NYC Form M-13d or have been given other guidelines or directives on how to assess eligibility. Knowledge of the laws, regulations and directives governing CDPAP developed over many years is critical. For example, GIS 08-LTC-005 clarifies that the family member or other person directing care does not have to be present at all times in which skilled nursing tasks are administered by a CDPAP aide to a non-self-directing recipient of CDPAP.
Request Services at Local DSS. People who are exempt or excluded from MLTC, or who have an "Immediate Need" for services and are not yet enrolled in an MLTC can apply at their local DSS. The Immediate Need procedure may include both applying for Medicaid and requesting home care approval from DSS. See more about Immediate Need here. Once approved, the local DSS authorizes CDPAP. After 120 days of receipt, the individual will be transitioned to MLTC. See more about Transition Rights here and here.
- The State posted these documents that govern how MLTC plans must provide CDPAP services to find online, go to Medicaid Redesign Team page, scroll down to MRT 90 - MLTC and then to CDPAS Final MLTC Documents (posted around 10/1/12)
Responsibilities of the Health Plan and Consumer (acknowledgement that MLTC member must sign)
Policy for the Transition of Consumer Directed Personal Assistance Services into Managed Care
Administrative Agreement for the Provision of Fiscal Intermediary Services for the Consumer Directed Personal Assistance Program
Transition Rights - When a consumer is required to transition to an MMC or MLTC plan, after receiving CDPAP services through their local DSS, the MMC plan is required to continue the services previously authorized by the local district (HRA or DSS) for 90 days, at which time the MMC plan re-assesses need. See more about Transition Rights here and here.
7. Help with Understanding and Using CDPAP -
The Consumer-Directed Personal Assistance Association of NYS (CDPAANYS) has lots of resources on its website.
- Peer Mentoring Program --CDPAANYS offers Peer Mentoring services to prospective and current CDPA consumers and designees who may have questions about the program or are seeking assistance with successfully running their own CDPA program. Peer Mentoring is always free for those who use the service. You can reach their team of Peer Mentors by calling the toll-free number, 1-855-423-7733 (1-855-4CDP-PEER), or sending an email to email@example.com. See more here.
Concepts of Independence - the largest and oldest fiscal intermediary, has tutorials and other info. on its website
CaringKInd NYC -- TogetherWeCare Program - Consumers or their families can find aides who have completed the CaringKind Dementia Care Training for Professional Caregivers (CaringKind was formerly the NYC Chapter of the Alzheimer's Association)
8. CDPAP Laws, Regulations and State Policy Directives & History of CDPAP
This article explains the CDPAP program in NYS, with cites to state statutes (some have been amended since). Note that this article pre-dates mandatory MLTC.
The statutes establishing the CDPAP program include Section 365-f of the Social Services Law and N.Y. Educ. Law § 6908(1)(a) (also known as the Nurse Practice Act, which creates an exception that allows CDPAP aides, along with family and other unpaid informal caregivers, to perform tasks that otherwise may only be performed by licensed nurses.
The State published final regulations, effective April 20, 2011, creating a new section 28 to 18 NYCRR Part 505. See New York State Register April 20, 2011/Volume XXXIII, Issue 16 (pp. 7-8)
See December 2015 NYS Dept. of Health GIS 15 MA/024 - Changes to the Regulations for the Personal Care Services Program (PCS) and the Consumer Directed Personal Assistance Program (CDPAP) (PDF) NOTICE OF ADOPTION
The following directives have been issued since the above article was written in 2003:
Non Medical Transportation in the Consumer Directed Personal Assistance Program GIS 08-LTC-007 (issued as a result of litigation or threatened litigation, described in this article)
GIS 10 LTC 005 - Consumer Directed Personal Assistance Program (CDPAP) Documents - lists all State directives that currently apply to CDPAP in NYS as of 8/25/10
11LTC004 - Consumer Directed Personal Assistance Program (CDPAP) Services Provided Out of State
11ADM-06 - Consumer Directed Personal Assistance Program (CDPAP) Scope and Procedures (PDF, 86KB, 14pg.)
11LTC 007 - New State Law Requiring Automatic Change To No More than 8 Hours Per Week of Nutritional and Environmental Support Functions (Level I) For Personal Care and CDPAP Consumers Who Are Authorized to Receive Only Nutritional and Environmental Support Functions
12-ADM-01 - Changes to Personal Care Services Program and Consumer Directed Personal Assistance Regulations Resulting From MRT #4652
Medicaid Update (Vol. 32 No. 3, March 2016) and GIS 16 MA/006 - Changes to the Statute for the Consumer Directed Personal Assistance Program (CDPAP) PDF explaining changes in statute allowing children or parents of adult consumers to be the personal assistants.
GIS 23 MA/18 - Clarification on Legal Guardians Serving as CDPAP Personal Assistant (Oct. 23, 2023) and MLTC Policy 23.04: CDPAS Legal Guardian (Oct. 23, 2023)
DOH clarified "that a court-appointed (legal) guardian, including a parent-guardian of an adult aged 21 or older, may serve as an adult individual’s CDPAP personal assistant provided they are not also the individual’s designated representative."
State Managed Long Term Care Contracts, Guidelines re CDPAP (Posted Oct. 1, 2012, eff. 11/1/2012)
For a history of the development of the consumer-directed program in New York City, which was a national leader in launching this form of service 33 years ago, see this article., along with:
9. RATE CUTS and LITIGATION 2019
On October 11, 2019, the Albany County Supreme Court enjoined NYS DOH from implementing a new reimbursement methodology for Consumer-Directed Personal Assistance (CDPAP) which would have drastically cut reimbursement rates. See court decision here.
Because of this decision, the State DOH guidance implementing the rate cuts will not go into effect. This includes FAQ’s about the reimbursement rate cuts for (CDPAP) services that went into effect on September 1, 2019 for Fee for Service CDPAP (not CDPAP provided through managed care or Managed Long Term Care plans), and DOH Managed Care Policy 19.01: Implementation of Fiscal Intermediary (FI) Rate Structure Enacted in the SFY 2019 NYS Budget (Appendices can be downloaded on MRT 90 page - click on 2019). The court decision enjoins the State's implementation of changes in how CDPAP Fiscal Intermediaries are reimbursed enacted in the state budget in April 2019, which would have the effect of cutting rates by $75 million in state funds ($150 including federal funds).
The lawsuit, filed by CDPAANYS and individual Fiscal Intermediaries, claims that the rate cuts violate both federal and state requirements, and are so severe that will put many CDPAP fiscal intermediaries out of business, effectively ending the CDPAP program. As reported in the Utica Observer-Dispatch on Oct. 3, 2019, “Some managed care companies, though, have already started changing contacts with fiscal intermediaries in anticipation of lower rates, advocates said.” Advocates: State Cuts Threaten Medicaid Home Care Program. The article further stated:
"The horror stories are already flooding in of cuts and threatened cuts affecting services, said Bryan O’Malley, executive director of the Consumer Directed Personal Assistance Association.
“The department of health cut this program by over 15 percent without even a basic understanding of what the agencies do,” he said in an email. “DOH is sticking by their talking point that services and wages would not be affected, but now that we are seeing the real-life repercussions, they can’t hide behind this myth any more. The devastation their actions are causing to thousands of New Yorkers is inescapable.”
Having participants simply switch to receiving services through existing staff at home care agencies is problematic, advocates said, given a shortage of home care workers, particularly in rural areas."
The lawsuit was previously reported about in Crain's NY Business on Aug. 14, 2019 and Spectrum News on August 1, 2019.
The first round of cuts directly effect CDPAP services provided on a Fee-for-Service basis through local district Medicaid programs, not those enrolled in Medicaid managed care or MLTC plans. However, advocates and the CDPAP association contend that the cuts will force many CDPAP provider agencies, called Fiscal Intermediaries (“FI”), to close - resulting in reduced access to this service across the state for the 90,000 consumers who rely on CDPAP services, in MLTC plans and managed care plans as well.
Also, many consumers choose CDPAP because they have “skilled” needs that traditional personal care aides may not perform, such as suctioning a tracheostomy, operating a ventilator, or directly administering insulin or other medications. See Scope of Tasks of various types of aides. While they may be eligible for Medicaid Private Duty Nursing services, managed care and MLTC plans resist authorizing these services because they are so expensive. These consumers, and others facing reduced access to care when the FIs close, may well be forced into nursing homes.
The July 2019 DOH guidance implementing the CDPAP rate cuts -- Managed Care Policy 19.01 –provides for transition rights to ensure “a smooth transition of consumers to a different FI in the event that an FI no longer provides services or leaves a service area.” Advocates warn that the transition rights are insufficient. In comments to a Workgroup convened by State DOH, The Legal Aid Society warned that “these transition rights only apply to CDPAP enrollees transferring from one FI to another,” not to those CDPAP enrollees who are forced to transfer to traditional personal care services because there is no CDPAP FI with capacity to serve them (copy on file with NYLAG EFLRP). The Legal Aid comments also stated that the State’s guidelines do not provide for directing consumers where to go for help if they face disruption in services – whether New York Medicaid Choice, the State’s enrollment broker for managed care and MLTC plans, or ICAN – the State’s Ombudsprogram for consumers in MLTC plans or receiving long-term care services in managed care plans.
This article was authored by the Evelyn Frank Legal Resources Program of New York Legal Assistance Group.