Rochester family fighting planned changes to NY’s CDPAP

ROCHESTER, N.Y. (WROC) — Governor Hochul’s Office is defending its decision to move forward with what it refers to as ‘reforms’ as opposed to ‘cuts’ to a Medicaid program which allows people living with disabilities and the elderly to choose and access care while at home.

This program can allow for family members to support other family members, or oftentimes informal caregivers. The Consumer Directed Personal Assistance Program (CDPAP), established by the state legislature in 1995 under Social Services Law 365-f e, is slated to undergo major changes at the fiscal budget’s current planned course of action, which would take effect April 1st, 2025.

More than 30 state lawmakers, including Senator Samra Brouk and Senator Jeremy Cooney from our region, signed on to a letter penned by Senator John Mannion to the Deputy Administrator & Director of the Center for Medicaid and CHIP Services (see below). It calls for urgent action to review, pause, and investigate the planned restructuring, citing dire concerns of disruption of care for an estimated 250,000 New Yorkers the program serves.

The Governor’s Office says the CDPAP program saw $9 billion in spending last year, something unsustainable in the long term, and claims the overhaul would rather strengthen the program by “making sure taxpayer dollars are effectively serving the patients who need them.”

At the core of the changes: reducing the estimated 600 ‘Fiscal Intermediaries’ (FI’s) statewide businesses down to 1. FI’s serve as a bridge between government programs like Medicaid and the person receiving the care from the service worker, often fulfilling administrative tasks.

In a “Questions and Answers” document regarding the NYS Dept. of Health processes for its Request for Proposals to select the sole statewide Fiscal Intermediary, dated August 7, 2024, the DOH states the contract will not be subject to a review by the State Comptroller’s Office. The question “Approximately how many individuals are receiving both CDPAP services and additional PCA services through agency care?” was given this response: “The Department does not have this information.”

One Rochester mother and daughter are at the helm of growing efforts to convince the Governor and her administration to reconsider the current course of action ahead of an upcoming October 1st deadline to award the FI bid.

Heather Burroughs and her 17-year-old daughter, Devyn Pereira, are featured in a newly released ad campaign, sponsored by the Alliance to Protect Home Care, founded by the Consumer Directed Personal Assistance Association of New York, showcasing how CDPAP has impacted their lives. Heather, a mother to three other children with disabilities, also works as a psychologist and is currently serving as the Director of Advocacy and Education at AutismUp. The certified health and wellness coach grew up in Rochester and now lives in Hilton with her family.

Devyn was born with AGO2, a rare genetic disorder with symptoms including life-threatening seizures, complete motor delays, legal blindness, non-speaking, and sensory problems. Devyn is currently in her senior year in high school where she receives care from a nurse and aide at school, and full-time CDPAP home care.

“Having 8 caregivers is a lot of work you know but at the same time – we’re giving her variation and she learns to be flexible but she doesn’t lose her choice,” Heather Burroughs says.

Heather explains how the CDPAP qualification process includes a yearly assessment to ensure maintained eligibility. According to the State Department of Health website, those 18 years of age and older must have a community health assessment, as well as a clinical appointment completed by the New York Independent Assessor (NYIA) to formally determine if the patient qualifies. For Heather, Devyn was always part of CDPAP, having a range of disabilities since birth – and according to the NYSDOH, in order for children (18 and under) to qualify for CDPAP, a doctor must send a completed Physician’s Order for Services to the local social services district, which then completes a community health assessment.

“With CDPAP we get to pick and choose who’s coming into our home — they’re not assigned to us, we could recruit people — she could meet somebody at school and say I really like this aide that works in this classroom — let’s talk to her and see if she wants to do some shifts with me so she has this autonomy and she has choice,” Heather says, continuing, “because when you’re a 17-year-old girl — I don’t know about you — but I would be particular about who’s gonna help me bathe and toilet and get dressed,” Heather says.

She also draws attention to the fact that disabilities can come in more forms than genetic, citing examples of a routine surgery mishap, or car crash resulting in life-changing injuries, “we may all need care at some point.”

According to state lobbying records disclosed this week, as pointed out by the Governor’s Office, some of the agencies working as Fiscal Intermediaries, including Rochester-based Burd Home Health, are contributing to the Alliance to Protect Home Health Care. Those documents also show the total cost of the newly-released ad campaign, which also features more than Heather and Devyn’s story, is $658,143.

The full response from Governor Hochul’s Office is below:

“CDPAP is an important program that empowers New Yorkers to choose their own care at home. We’re committed to protecting home care patients, strengthening CDPAP and ensuring the program is sustainable. Our reforms will advance that goal by making sure taxpayer dollars are effectively serving the patients who need them.”

BACKGROUND:

– CDPAP spending was over $9B last year, which is not sustainable for the long term.

– CDPAP is an important program and Governor Hochul is focused on protecting it for the people it serves.

– The challenge facing CDPAP is that there are over 600 fiscal intermediaries taking a significant cut of taxpayer dollars without providing enough value to patients or caregivers.

— These entities are not responsible for scheduling care or for supervising caregivers to ensure quality standards are met. They essentially take money from Medicaid and then process the checks to caregivers, after taking a cut for themselves.

— We’re reining this in to focus on quality service and increase oversight of the program, so that we can make sure taxpayer money goes to pay caregivers instead of being siphoned off by middlemen.

— In fact, state lobbying records disclosed yesterday (as seen attached) gave some important insight into the Alliance to Protect Home Care – a special interest group which is spending a lot of money on ads slamming our reforms to CDPAP. As you can see attached, several prominent fiscal intermediary

companies are funding that group’s activities – with contributions of around $650,000 in June alone.

— The RFP process to select a single FI is continuing on its current timeline, which is to award the contract by Oct. 1

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