Consumer Directed Personal Assistance Association of New York State
SUMMER LEARNING SERIES - REGISTRATION IS NOW OPEN FOR LONG ISLAND & NEW YORK CITY!
CDPAANYS is excited to announce our Summer Fiscal Intermediary Learning series, featuring 4 regional half-day conferences around the state in Long Island, New York City, Albany, and Rochester. These sessions are all live and in-person, focusing on networking & education for agency owners, leaders and employees.
Registration is OPEN for Long Island on June 15 and New York City on June 16. CDPAANYS members receive 50% off with coupon code.
Click here for more information.
Quick Links:
Register online for Long Island.
Register online for New York City.
Remembering Sally Johnston
Written by Bryan O’Malley, Executive Director
Last night, Sally Johnston, a true leader in our world, passed away. Sally was the voice of conscience in our movement. She dedicated her life to improving the lives of others. Many of you know Sally and the critical role she played in our life. You are the lucky ones, because I can truly say that every person who came in reach of Sally had their life improved – as well as tens of thousands who never knew she existed.
Early career
Sally started her career in advocacy in 1975, at the age of 30. By her own admission, she didn’t know what advocacy was, she was just stubborn and had opinions. In her words, she didn’t have a college education because they told her “You’re too disabled to go to college. You’re too disabled, you’ll never get a job.” And Sally being Sally, well, she said “Really? Screw them. I’m gonna go get a job.”
With that, she began volunteering at a brand new community center. Again, as she tells it, she might have been a volunteer, but she was opinionated – and not shy. At every staff meeting, Sally spoke up and said “I have an idea.” And one of those ideas resulted in two folks with disabilities coming into the center and asking to use some space for a meeting.
This was Sally’s introduction to the disability rights movement. And anyone that knows Sally knows that she doesn’t do anything halfway. So she went out, bought a book by famed community organizer and activist Saul Alinsky, and began organizing. She also began educating. Working with members of the community to talk to and build relationships with county elected officials, she eventually succeeded in getting public office buildings made accessible throughout Syracuse and Onondaga County – over 15 years before the ADA!
Then she turned her sights on transportation. For 14 years, Sally worked with activists across Syracuse to make the buses accessible. For 14 years she would lie down in front of buses. She would chain herself to buses. She would literally risk her life (you’ve seen a bus, right?) to fight for accessibility. But it didn’t stop there. She also did her research. She used her connections from years of getting public buildings made accessible, and finally – she won. Making buses in Syracuse accessible prior to the ADA.
Sally and CDPA
That was when Sally got involved in long-term care. She would continually get calls from people to get out of nursing homes. But there were no services, or they were insufficient. That’s when a demonstration program passed for the creation of a small new program that would run in New York City and one Upstate county. Sally made sure, through her connections with County officials, that Onondaga was that county.
That program was the precursor to CDPA. The demonstration would go on and pave the way for the statewide implementation of CDPA a few years later – after Sally’s work created strong, bipartisan interest.
Then she went to all the advocates who joined her fighting for CDPA and convinced them that the victory would be for nothing if there was not a statewide organization fighting for it in Albany. She brought together all the advocates who fought for the program and the Consumer Directed Personal Assistance Association of NYS was born.
Sally was the first Board President of CDPAANYS and played the critical role in getting the organization off the ground, creating much needed relationships within DOH to advocate for it and make sure that reluctant counties implemented it – and properly. Properly of course didn’t mean the way the state wanted – it meant the way SALLY wanted it!!
Sally continued with CDPAANYS throughout her career, and into retirement. She came to Albany repeatedly, even as her health was beginning to struggle. She was here throughout the effort to #SaveCDPA. She was here for the fight to #ProtectMedicaid. She was featured in a commercial about #FairPay4HomeCare (and that was just the start of her efforts there!!).
Legacy
Sally never stopped fighting, and her legacy lives on across the state. In 2011, CDPAANYS honored Sally with our Advocacy Award, which that year was also permanently renamed The Sally Johnston Award for Advocacy. This award recognizes the lifetime of work Sally has done, going each year to a person or group whose advocacy efforts have moved CDPA forward in a dramatic way.
In 2022, Sally was recognized further for her work when she was inducted into the Disability Rights Hall of Fame, created and run by the New York State Independent Living Council.
And she will be with us in every fight, because her legacy lives on in every person who makes a phone call, or sends an email, or meets with their Legislators, or…gets arrested.
Sally will be will us in our fight, because she would not want us to stop fighting, even for a second. I consider myself extremely fortunate to have gotten to know her, to have fought beside her, and to have called her not merely a colleague, but a friend.
Sally would call me and get so mad about different things. But that anger was never cynical. It was never defeatist. That anger was productive. It was always “What are we gonna do about this?” Sally would never accept defeat, and she always worked to build.
In her memory, I hope we can all continue to work to build from Sally’s legacy. Her fight moved us all forward, and left a lasting legacy in laying the foundation for the movement CDPAANYS is proud to lead. I hope you will join in continuing her fight as she finally takes her moment to Rest in Power.
Thank you Sally.
MARCH 13 DAY OF ACTION: CDPA IS ESSENTIAL
Please sign up here if you will be attending the March 13 Day of Action in Albany against Gov. Hochul’s cuts to CDPA, hosted by Consumer Directed Action of New York, 1199, New York Caring Majority & others.
WHAT: Albany Day of Action for CDPA
WHERE: Meeting Rooms 2-4, Empire State Plaza, Albany NY (Meet at McDonald’s at 10:30!)
WHEN: Monday, March 13, Rally at 11:00 AM; Press Conference at 1:30 PM
This rally & press conference will focus on the fact that Governor Hochul’s budget includes $1 billion in cuts to CDPA, in the form of wage cuts up to $4/hour. We’ll talk about the importance of CDPA, the fact that PAs are essential, and drive home the message that this critical work is not minimum wage work – and our workers are not second class home care workers.
All are welcome!
DECEMBER 8: JOIN CONSUMER DIRECTED ACTION OF NY AT THE ROUNDHOUSE BEACON TO CELEBRAte FOUR SElf-DIRECTED POWER CHAMPIONS!
Consumer Directed Action of New York, the 501(c)(4) sister organization to CDPAANYS, invites you to our first annual winter gala, A Celebration of Self-Directed Power on Thursday, December 8, 2022 at The Roundhouse Beacon from 6:00 to 9:00 in the evening.
Your ticket includes open bar (beer & wine), passed hors d’oeuvres & stations, entertainment, raffles, and an awards ceremony recognizing four of New York’s most important self-directed power champions: Assembly Member Richard Gottfried, Senator Rachel May, Sage Jobsis & Mark Ressl, and Fausto Romero.
Click here for information on how to register & become a sponsor.
DECEMBER 8: JOIN CONSUMER DIRECTED ACTION OF NY AT THE ROUNDHOUSE BEACON TO CELEBRAte FOUR SElf-DIRECTED POWER CHAMPIONS!
Consumer Directed Action of New York, the 501(c)(4) sister organization to CDPAANYS, invites you to our first annual winter gala, A Celebration of Self-Directed Power on Thursday, December 8, 2022 at The Roundhouse Beacon from 6:00 to 9:00 in the evening.
Your ticket includes open bar (beer & wine), passed hors d’oeuvres & stations, entertainment, raffles, and an awards ceremony recognizing four of New York’s most important self-directed power champions: Assembly Member Richard Gottfried, Senator Rachel May, Sage Jobsis & Mark Ressl, and Fausto Romero.
Click here for information on how to register & become a sponsor.
CoNFERENCE SCHOLARSHIPS AVAILABLE FOR CONSUMERS!
Eligible consumers & designated representatives may apply for scholarships to attend our 19th Annual Conference at a discounted or free rate.
Scholarships cover, fully or partially, the cost of conference registration, meals, overnight accommodations, and transportation reimbursement.
Please share this information with anyone who might be interested.
SPRING/SUMMER WEBINAR SERIES FINALE July 22 at 10 AM: contract negotiations in managed care
Cara Henley, Senior Consultant
Health Management Associates
Friday, July 22, 2022 at 10:00 AM
CDPAANYS is thrilled to welcome Cara Henley, Senior Consultant with Health Management Associates, for a discussion on contract negotiations in managed care for providers.
A policy expert in insurance, managed care & value-based purchasing, Cara provides leadership and guidance on the impact of federal and state statutory & regulatory activity on operational decision making. Her knowledge base includes Medicaid reform, the Delivery System Reform Incentive Payment (DSRIP) program, Medicare payment requirements, and Medicaid managed care organization requirements.
WEBINAR JUNE 24 at 10 AM: Understanding the provider impact of fair pay for home care
A Panel Discussion Featuring:
Friday, June 24, 2022 at 10:00 AM
Join CDPAANYS and a panel of providers this Friday, June 24 for an in-depth discussion on the Fair Pay for Home Care campaign, effects on providers in the home care and fiscal intermediary spaces, and what lies ahead in the future. While it is well established that home care workers and personal assistants are set to receive a $3/hour wage increase over the next two years, the impact of these changes on providers is less clear.
ADVOCACY DAY MATERIALS ARE HERE!
CDPAANYS is happy to provide meeting materials and resources for you to use and share with your legislators. These documents provide an overview of the issues we are fighting for, and also inform elected officials about important information such as bill numbers, bill sponsors, and more.
ADVOCACY DAY MATERIALS ARE HERE!
CDPAANYS is happy to provide meeting materials and resources for you to use and share with your legislators. These documents provide an overview of the issues we are fighting for, and also inform elected officials about important information such as bill numbers, bill sponsors, and more.
BUDGET & ADVOCACY DAY BRIEFING: FEB 10 at 1 PM
CDPAANYS will be hosting a virtual briefing on Thursday, February 10 at 1:00 PM.
Don’t miss this opportunity to learn about this year’s NYS draft executive budget and how you can get involved in the fight for #FairPay4HomeCare and other legislative priorities that impact people who use CDPA.
Statement from Executive Director Bryan O'Malley on Governor Hochul's 2022 State of the State Address
“Governor Hochul today signaled that she is aware of New York’s “worst in the nation” home care workforce crisis and that she intends to do something about it. While we are thrilled with this acknowledgment, we also know that the devil is in the details and we now eagerly await the Governor’s budget. Aging and disabled New Yorkers have waited for over a decade for action to address the workforce shortages that are preventing access to critically needed services, and every day they are forced to continue to wait, their risk of institutionalization, or worse, rises. We look forward to working with the Executive and the Legislature over the next several months to ensure that Fair Pay for Home Care, and an investment that fully funds a wage of $22.50 per hour for this critical workforce dominated by women of color, are included in this year’s budget.”
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Statement from CDPAANYS Executive Director Bryan O'Malley on the increase in the "Upstate" minimum wage
“New York State is the epicenter of a national home care workforce crisis. According to national experts, the state has a shortage of almost 50,000 home care workers, which means tens of thousands of seniors and people with disabilities are going without critically needed healthcare services or are being unnecessarily forced into nursing homes.
While an increase in the minimum wage is necessary, the Consumer Directed Personal Assistance Association of New York State (CDPAANYS) highlights that businesses in the Upstate region who are not reliant on the state for funding, such as Stewart’s Shops, Amazon warehouses, and McDonald’s, are already paying their workers $15 – $17/hour. At this point, increasing the minimum wage will not do anything to address the home care workforce crisis.
For meaningful action, we must enact Fair Pay for Home Care, legislation sponsored by Senator Rachel May (Onondaga, Madison) and Assembly Member Richard Gottfried (New York County), which would set wages for home care workers at 150% of the highest minimum wage in a region, or $22.50/hour. This would solve the home care workforce crisis once and for all.”
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Update on NYS VACCINE MANDATES
New York State Department of Health has put out a new FAQ clarifying that fiscal intermediaries, consumers, and PAs in CDPA will not, in most instances, be required to get the COVID-19 vaccine in order to continue working.
Based on the guidance, there may be limited circumstances where FI staff (those who work in the agency) may be required to get a vaccine, and even more limited circumstances where a consumer or PA may be required to get the vaccine themselves. If you find yourself in this situation and are not willing or able to be vaccinated, explore whether there are options that can prevent the mandate from applying, such as direct deposit or other measures.
This decision is only applicable as it relates to NYS Department of Health requirements. President Biden has also indicated he is putting in place different requirements that we are continuing to pay attention to; but, which are not final.
DOH RESCINDS COVID-19 enrollment, assessment, reassessment waivers
The Department of Health has just issued new guidance that immediately rescinds the Guidance Document from March 18, 2020 regarding assessments, reassessments, authorizations, PA health assessments, and other matters.
The document details exactly what has been rescinded and what proposals remain in place, as well as transition timelines.
EARLY BIRD CONFERENCE REGISTRATION IS OPEN!
Click here to register for the conference!
Register online before September 1, 2021 to receive $50 off the cost of registration.
CDPAANYS is offering a virtual conference option for those who cannot or do not wish to attend in person. Please make sure to specify when registering whether your attendance will be in person or virtual.
$250 CDPAANYS Members (discount code required)
$300 Non-Members
$75 Non-Member Consumer
$50 CDPAANYS Member Consumer
For more conference details, including lodging and sponsor information, please visit our conference page.
Issue Brief: In NYS, Fast Food Wages Will Surpass Home Healthcare Wages on July 1, 2021
View the brief in its entirety here.
On July 1, 2021, the fast-food minimum wage will increase to $15 per hour statewide, catching up with New York City where this rate had been in place since December 31, 2018. For non-fast food industries, the current minimum wage outside New York City, and Nassau, Suffolk, and Westchester counties is $12.50/hour.
After July 1, fast food workers upstate will earn $2.50 more per hour than the vast majority of home care workers, nearly all of whom make at or slightly above the minimum wage. Low wages have made it increasingly difficult for self-directing Medicaid consumers and home care agencies to hire workers to provide home and community-based services that empower people with disabilities and seniors to live independently rather than in an institution.
As fast-food wages have risen, home care wages have stagnated, leading to ‘worst in the nation’ crisis in recruitment and retention where tens of thousands of seniors and disabled are forced to go without services or become institutionalized…
June 22 Marks the 22nd Anniversary of Olmstead v. L.C. by Zimring
FOR IMMEDIATE RELEASE
June 22, 2021
June 22 Marks the 22nd Anniversary of Olmstead v. L.C. by Zimring
Landmark Supreme Court Case determined disabled individuals have a right to services within the community over institutionalization
The Consumer Directed Personal Assistance Association of New York State (CDPAANYS), along with disability advocates across the country, is celebrating the twenty-second anniversary of the Supreme Court’s historic civil rights decision in the case of Olmstead v L.C. (by Zimring). In the intervening years, the decision has begun to fundamentally shift the landscape of how services are provided to physically, mentally, and developmentally disabled individuals. Without it, the horrors of COVID-19 in nursing homes and other institutions would have been even worse.
Lois Curtis, a Black, disabled woman involuntarily committed to institutions from childhood, will remain in the pantheon of civil rights heroes such as Rosa Parks or Harriet Tubman. Despite being told by medical professionals and State officials that she must be in an institution, she successfully challenged the State of Georgia who had enforced this arrangement. The Court found that Medicaid-funded services for individuals with disabilities must be provided within the community over institutionalization if desired by the recipient. Today, Lois Curtis lives independently and is a successful artist who received the Harriet Tubman Act of Courage Award in 2007 for her efforts in fighting injustice.
“While this anniversary is a day of celebration, it is also an important time to reflect on where we go next”, said CDPAANYS Executive Director Bryan O’Malley. “It has been more than two decades since this decision was handed down and here in New York, thousands are being forced into nursing homes despite their desire to be active members of their community.”
Consumer directed personal assistance (CDPA) is an increasingly popular option for those seeking to stay at home. Because those who need services hire and supervise their workers, the program provides the maximum amount of flexibility and participation in community activities. However, repeated cuts to Medicaid reimbursement rates over the last decade have artificially suppressed worker wages while other sectors, such as fast food and retail, pay more hourly. This has led to New York being home to the largest workforce shortage in the nation, according to Mercer workforce consulting.
Nikki Reese, a disabled woman from the Bushwick neighborhood in Brooklyn, has been using CDPA for years to allow her to live independently. However, she notes that when she recently had to fill an open spot, it took almost three months to do so, and she counts herself lucky. “My workers are very professional. They work odd shifts and overtime to do what is needed to keep me safe and at home.” When she was finally able to hire new staff, Nikki notes that she was forced to do so without taking steps that she, like most employers, typically would. “I was desperate. I had to skim over what I usually do. I couldn’t check references or take the time to see who might work best with me. I just needed help.”
Geri Mariano, a disabled woman living in Westchester, said, “Starting in September 2020, while still in the throes of the COVID-19 pandemic, I began having PAs leaving for other jobs. This forced me to put my health at further risk as I interviewed potential workers contrary to medical recommendations and the Governor’s own guidance regarding COVID-19. Several applicants who went as far as taking forms to fill out would cancel appointments to finalize, telling me they were offered other employment for higher pay. Many would instantly turn me down based on the low pay wage. Since September I have not had full coverage – even though I was approved for twenty-four hour shifts just a few months ago. As of today, I have to go as long as twelve hours alone at times. Because of surgeries gone awry over past 11 years I am mostly bed-bound and definitely stuck in bed when alone since need full assistance to get up into WC. In 1969, progressive thinking social workers helped make sure I could grow up with a family and not in an institution after being abandoned by biological parents. Today, if New York is to meet the promise of the Olmstead v. L.C. decision, we must do better and pay home care workers enough so they will want to stay in these jobs and so I can continue to live the life I want to and deserve to live in the community.”
Advocates also point to recent policy shifts apart from funding that have jeopardized New York’s compliance with the mandate established in Olmstead v L.C. Policies that encourage institutional placement for those who receive a high level of services would mandate nursing home placement despite a lack of clinical evidence indicating that hours of care can provide a basis for decision-making on one’s ability to live independently. Additionally, changes in how assessments are conducted and the legal appeal rights of seniors and disabled folks in need of services also pose a significant risk.
T.K. Small, an attorney in Brooklyn who uses CDPA today, spent 9 1/2 years in a rehabilitation hospital for kids, summed it up this way, “I had to fight to get out and build a life for myself. I won’t go back to living in an institution. I will give everything I have to make sure New York lives up to the mandate of Olmstead v L.C., because my independence, and the independence of all disabled New Yorkers, demands it.”
REPORT: THE IMPACT OF COVID-19 ON CDPA IN NEW YORK STATE
As part of CDPAANYS’ work identifying and bringing light to disparities and gaps in services related to COVID–19, we issued a survey to collect data on the impact of the pandemic on consumers and workers.
It was widely acknowledged that many health conditions that require long-term care increase the rate of mortality from COVID-19, but the conditions for people using community based services like CDPA did not receive nearly as much attention. CDPAANYS wanted to know how the pandemic was affecting consumers and their access to services, and sent a survey to members in April asking about changes in staffing and access to personal protective equipment (PPE), among other disruptions. We used the results to create a report that we shared with lawmakers and journalists in order to bring attention to the growing long-term care crisis and advocate for legislative solutions.
You can read the final report from the survey, “The Impact of COVID–19 on Consumer Direction in New York State,” by clicking here.
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Advocacy & News Updates
Celebrating the life of Sally Johnston
By Bryan O'Malley Last night, Sally Johnston, a true leader in our world, passed away. Sally was the voice of conscience in our movement. She dedicated her life to improving the lives of others. Many of you know Sally and the critical role she played in our life. You...
In Celebration Of Judith (Judy) Ellen Heumann
In Celebration Of Judith (Judy) Ellen Heumann (December 18, 1947 – March 4, 2023) By Athena Savides, Peer Mentor On the morning of March 8, 2023, there was a Celebration of Life for Judy Heumann in Washington D.C. Hundreds of people were in attendance, while many...
MARCH 13 DAY OF ACTION: CDPA IS ESSENTIAL
Please sign up here if you will be attending the March 13 Day of Action in Albany against Gov. Hochul’s cuts to CDPA, hosted by Consumer Directed Action of New York, 1199, New York Caring Majority & others. WHAT: Albany Day of Action for CDPA WHERE: Meeting Rooms...