Home Care Advocates protest 2025 state budget changes to CDPAP
Home care advocates marched from Canalside to the Governor's Buffalo office today to deliver letters, protesting her new plan for the state's Consumer Directed Personal Assistance Program.
Governor Kathy Hochul announced on Tuesday that the state will contract a statewide partner, Public Partnerships LLC(PPL), to oversee four separate organizations that will each provide care for different regions of the state. In a press release, Hochul said, "Our plan will deliver a stronger CDPAP and leverage a diverse, statewide partnership to ensure the high-quality, personalized care that New Yorkers need,". They also said that it will help protect users and providers from agencies that misuse funds and don't provide adequate care.
Protesters today said that this plan will take choice away from those using home care. Renee Christian said that because of this she has no choice, and neither do those providing her care. Christian said, "I should be able to choose what agency I want to work with, but if there's only one then that's no choice. Having the ability for workers to choose what agency provides the best benefits for their needs,". She is worried that if she doesn't like the agency assigned to Buffalo, Angels in Your Home, then she would be forced to move into assisted living or a nursing home, where she would no longer be able to take care of her daughter. "Home care is really important to me because it allows me to stay in my home, to stay in my community, to be a valued member of my community," Christian said.
Steven Pehta is the director of business development for Trusted Choice Homecare, he said that transferring to PPL will also take the hometown personal understanding out of home care. "We are talking about stripping folks from agencies who were born and raised in their cities, are agencies in Buffalo," Pehta said, "Home care is a personal business alright, these are people who need help with the most intimate of tasks and they should have the ability to choose not only their caregivers but also what agency is providing those services for them.”
To watch reporting from WGRZ-TV Buffalo, click here: https://www.msn.com/en-us/video/health/week-of-action-letter-to-governor-hochul/vi-AA1ry5ro?ocid=socialshare
People with disabilities face extra hurdles amid housing shortage
Millions of Americans are priced out of homes and apartments. For people with disabilities, finding an accessible place they can afford can be even more challenging. Judy Woodruff reports on the affordable housing shortage for our series, Disability Reframed.
To read or listen to this interview, click here: People with disabilities face extra hurdles amid national housing shortage | PBS News
Action Alert: Help Us End Subminimum Wage and Support Fair Employment!
We need your support on the Transformation to Competitive Integrated Employment Act (TCIEA). This important law aims to end subminimum wages and promote fair, competitive jobs for people with disabilities. Supporting this act will help ensure that everyone with a disability gets fair pay and equal job opportunities.
How You Can Help:
Reach out to your legislators to let them you support ending subminimum wage for the disability community. Everyone deserves a fair wage!
For more information on the bill, click here:
Alert: Home Care NOT Cuts
Take action and tell Governor Hochul and NY Leadership that cuts to Home Care are not acceptable! You can send a pre-written digital letter here https://actionnetwork.org/letters/write-a-letter?source=direct_link&
ALERT: Pay Disabled Workers Competitive Wages! End Segregated Workspaces
Image of employees at a computer.
Disabled people deserve to work at the same places and for the same pay as nondisabled people. This isn’t news — but in 2024, some of us are still being paid less than the minimum wage in segregated workplaces. This is called subminimum wage, and it most commonly happens in sheltered workshops. It is discrimination, and it is unacceptable. That’s why we’re advocating for Congress to include the Transformation to Competitive Integrated Employment Act (TCIEA) in the Senate Health, Education, Labor & Pension (HELP) Committee’s workforce markup package.
The Transformation to Competitive Integrated Employment Act (S.533) is a bill that would create competitive integrated employment opportunities for disabled people. A package is when related bills get grouped together. In this case, the HELP Committee’s markup package has many workforce-related bills. We want TCIEA to be one of them! It is more likely to pass as part of a package than it is on its own. We also want more Senators to cosponsor the bill. (Cosponsoring means that a Senator supports a bill. Bills with more cosponsors are thought of as more popular.) Here’s how you can take action:
First, see who your Senators are by entering your state here.
Then, see if your Senators are on the HELP Committee. Check if they are on the member list here.
If either of your Senators is on the HELP Committee, call the congressional switchboard at (202) 224-3121 and ask to be connected to your Senator’s office. You can say “Please connect me to Senator [first and last name]’s office.”
Once you are connected to your Senator’s office, you can use our script:
My name is [your full name], and I am from [your city]. I am a constituent of Senator [Name]. I’m calling to ask Senator [Name] to add the Transformation to Competitive Integrated Employment Act, or TCIEA, to the Senate HELP Committee’s workforce markup package.
TCIEA would help states and businesses provide good jobs for disabled people so that we can be active in the workforce and more financially independent. New Hampshire, Maryland, Vermont, Arkansas and Oregon all show an increase in employment rates for disabled people since they switched from subminimum wage to fairly-paid employment in the community.
Disabled people want to work, and TCIEA would help us meet that goal. I would like to ask the Senator to include TCIEA in the HELP Committee’s workforce markup package, ensure its passage this congressional session, and cosponsor TCIEA if they have not already.
If one of your Senators is not on the HELP Committee, we’ve still got steps you can take. You can call the leaders of the HELP committee, Chair Sanders and Ranking Member Cassidy. Their contact information is:
Chair, Senator Bernie Sanders (202) 224-5141 and
Ranking Member, Senator Bill Cassidy (202) 224-5824.
You can use this script to plan what you will say:
My name is [your full name], and I am from [your city]. I am a constituent of Senator [Name]. I’m calling to ask Senator [Name] to add the Transformation to Competitive Integrated Employment Act, or TCIEA, to the Senate HELP Committee’s workforce markup package.
TCIEA would help states and businesses provide good jobs for disabled people so that we can be active in the workforce and more financially independent. New Hampshire, Maryland, Vermont, Arkansas and Oregon all show an increase in employment rates for disabled people since they switched from subminimum wage to fairly-paid employment in the community.
Disabled people want to work, and TCIEA would help us meet that goal. I would like to ask the Senator to include TCIEA in the HELP Committee’s workforce markup package, ensure its passage this congressional session, and cosponsor TCIEA if they have not already.
Wondering what to expect from a call to your elected officials? Check out this guide to making a call to your Members of Congress. If you can’t make a phone call, that is fine — sending an email will work too! You can find your Senators’ contact information on their websites.
Please call or email as soon as possible! Together, we can increase good jobs for disabled people and end subminimum wage. It’s past time to give disabled workers integrated, equal employment.
New Movie about the first fully quadriplegic sports team!
Movie poster for the movie Quad Gods
Jess Jacklin’s debut documentary Quad Gods, out now on HBO’s Max, follows three New York men - Blake Hunt, Richard Jacobs, and Prentice Hall - who meet at Mount Sinai Hospital’s neuro-rehabilitation lab and decide to form the first fully quadriplegic e-sports team.
The Unity Festival, one of the largest disability arts events in Europe, recently concluded in Cardiff, Wales. Artistic Director Ben Pettitt-Wade called on presenters to do more to showcase the work of disabled artists.
On Healthism, Sitting, Rest and Shame
by Rebecca Upton
The healthism in our society made me ashamed of the amount of rest I need. According to Our Bodies Ourselves Today at Suffolk University, "Healthism, simply put, is a harmful overemphasis on keeping healthy. It is a way of thinking that sees health, the appearance of health, and healthy-seeming activities as morally superior. Health is believed to equal success in life, and ill-health is seen as a shameful sign of failure. Healthism pervades our society, and leads to discrimination and exclusion against people who are, or seem to be, unhealthy." In our society, resting or sitting is seen as unhealthy and morally inferior to standing, walking, exercising, and being active. For me, resting means sitting rather than standing. To our society, choosing sitting over standing means laziness and that we are somehow less valuable. I know it isn’t true that I have less value because of my need to sit down - but I had to fight like hell to unlearn the shame I was taught to feel.
Woman resting on the grass facing the camera.
Growing up with a chronic illness, I always seemed to need to rest more than my peers. I was usually okay sitting, but anything that involved standing or walking would require me to ask if I could sit down for a bit. While I do not vividly remember anyone reacting poorly to my request, I do vaguely remember it happening sometimes, even if it was just an eye roll. I have sometimes needed to rest so badly that I've sat down on floors and sidewalks when there were no other options. I have felt like I was slowing others down due to rest breaks I needed, and even though it was usually just my internalized ableism, the feeling of burdening others due to my need for rest was heavy and uncomfortable. At concerts, I used to push myself as much as I could, standing until my legs felt numb, until I realized seeing the artist doesn't matter to me as much as my own physical comfort. Now, I often take breaks sitting in whatever chairs or benches they have available, enjoying the music even if my view is obstructed.
So many settings felt like torture for me. Going on field trips was hard because I was expected to walk around with my classmates. Vacations were hard too because my body needed rest, but if I sat, I missed the attractions. In gym class, which I thankfully didn't have to have often, I was expected to stand the whole time with my classmates. Anytime I went out with friends, I was often finding excuses to sit and feeling very uncomfortable if I couldn't. It was the best when another person felt a little tired too and also needed to sit. If everyone has energy and wanted to stand, I felt left out.
My need for rest has shown me how little others prioritize it. When I worked at a library and at a clothing store in my early 20's, my bosses were very annoyed when I asked to sit while doing my job, even though they knew I had Fibromyalgia. Once when I went to vote and was waiting for the others I was with, I asked a woman if I could use a chair that she was standing next to, and she gave me a strange look, likely due to the fact that I don't look "disabled." I once had to awkwardly ask a small venue owner if he had any chairs I could sit in because none were put out.
It’s hard to know exactly why I need so much rest. What usually happens is this: I stand for a while, then my calves feel uncomfortable, and my body starts to feel too heavy, like I might collapse. I don’t know if this is due to my Fibromyalgia or my hypermobility that causes issues or my newly diagnosed POTS. I don’t know how much it matters what causes it as long as I get the message across that I need to sit down and people are willing to accommodate me if necessary.
Man sitting by a lake looking at the mountains
Humans should be okay with resting, with sitting down. It shouldn't be considered a shameful act tied to laziness. Some people pride themselves in their ability to constantly avoid resting or taking breaks to the point that it is actually detrimental to their health. Unfortunately, they will pay for this later if they aren't already. Everyone will need to slow down their pace someday. The sooner they can accept that rest is not the enemy, the better. Capitalism has brainwashed us into thinking that sitting down and rest are lazy, standing and constantly working are superior. In order to resist capitalism, we have to sit down more.
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On Healthism, Sitting, Rest, & Shame - by Rebecca Upton (substack.com)
Let's Address Home Care Shortages - Tell Legislators to Sign the Home Care Data Transparency Act!
Let’s Address the home care shortage
As we continue to fight for individuals in the independent living community, support is needed to continue services and enhance them were possible. NY Caring Majority is working with other agencies and partners to address ongoing needs, including home care shortages.
We have a new bill, the Home Care Data Transparency Act (A10176 Gonzalez-Rojas/ S9266 May), which would require the state to make public a range of data about Managed Long Term Care. As we continue to make the case against private insurance in Medicaid-funded home care, we need to be able to track where the money goes.
Please contact your legislators and ask them to sign on to the Home Care Data Transparency Act.
Click here to look up your state senator and assemblymember and their contact info (click your legislator’s name and then scroll down to see their phone number!)
Script:
My name is [YOUR NAME] from [YOUR ADDRESS]. I’m calling to urge [NAME OF LEGISLATOR] to co-sponsor the Home Care Data Transparency Act (A10176/S9266). This bill would require the state to publish home care data it already collects. Amid an ongoing home care shortage, New Yorkers deserve transparency on basic home care data. For too long, aging and disabled New Yorkers have been left in the dark without access to basic information, including how much is spent on home care, how many home care hours are used, and who is going without services.
By shedding light on these metrics, New Yorkers will have the information and resources needed to understand how the state is providing home care services.
As our population ages and more New Yorkers turn to home care, we need clarity and transparency on this data so we can solve the home care shortage — and that starts with passing this transparency bill immediately. Can I count on [NAME OF LEGISLATOR] to sign on as a co-sponsor of A10176/S9266.
Please contact your legislators and ask them to sign on to S9266/A10176 immediately. For more info on the bill, read below.
What the Home Care Data Transparency Act does
Requires the state to make public a range of data about Managed Long Term Care. This data would:
Allow the public to determine whether the MLTC program is spending taxpayer money as intended:
How many people are enrolled in each Managed Long Term Care plan
What services people receive (for instance, what percent of MLTC spending goes to home care vs other services)
How many home care hours MLTCs are providing
Allow the public to understand how much profit MLTCs are keeping:
How much MLTCs are spending on home care hours vs. how much money is kept as profit
Show service denials:
Number of complaints filed for service denials - showing whether plans are wrongfully denying services
Show nursing home diversions:
How many MLTC enrollees wind up in nursing homes
One of the major purposes of the MLTC program is to keep people out of nursing homes and allow them to thrive in their communities. This data will help the public understand whether MLTC plans are achieving this mission.
New York's 2025 Budget Makes Big Changes to the State's Consumer Directed Program It by Joyce Famakinwa
Big changes are coming to the Consumer Directed Personal Assistance Program in 2025.
Last month, the New York state budget for 2025 passed. It will bring on sweeping changes for home care stakeholders and recipients in the state.
The budget makes major changes to New York’s Consumer Directed Personal Assistance Program (CDPAP).
Under New York’s CDPAP, individuals seeking care are allowed to hire a caregiver of their own choosing. This often means informal caregivers. These caregivers are paid for their services through the program.
The most notable change the budget makes to CDPAP is that it will designate one statewide fiscal intermediary to oversee the program.
Some of New York’s home-based care providers — AccentCare is one example — serve as fiscal intermediaries (FI).
“Our providers really feel like the state is trying to dig a hole with a grenade,” Kevin Wade, a vice president at Sandata, told Home Health Care News. “The state takes the perspective that there’s significant fraud, waste and abuse within CDPAP. They feel that by moving to one, singular FI, they can reach $200 million worth of savings. A change like this adds an additional layer of complexity to an already complex system.”
Sandata is a technology company and an electronic visit verification provider. It works with states, home-based care providers and MCOs.
Wade noted that there were likely other steps the state could’ve taken to help reduce fraud, waste and abuse that would not have upended the current system.
“There are ways to monitor and oversee programs without necessarily altering or transforming the way that care is delivered,” he said.
There are also many questions about how having one statewide FI would work in practice, according to Wade.
“There’s a lot that’s still to be figured out with one singular FI, in terms of how many subcontractors will be allowed within a given area,” he said. “We know that there’s going to be at least one subcontracted FI per rate setting region, so there’s four within New York State. But past that, it’s not known. We don’t know who this fiscal intermediary would be.”
Wade also pointed out that moving from hundreds of FIs to one could impact care, as many of the providers that serve in this role are entrenched in the communities they operate in.
Aside from changes to CDPAP, the budget included a minimum wage increase for home care workers, and Medicaid rate increases for hospitals, nursing homes and assisted living communities.
Say No to Subminimum Wage for Disabled Workers!
Learn more about subminimum wage
The American Dream often consists of finding a good job, having a roof over your head, enjoying friendships and fulfilling community relationships, and engaging meaningfully in activities each day. People with disabilities1 have more opportunities to achieve this dream than ever before, thanks to the nearly 34-year-old Americans with Disabilities Act (ADA), and a series of other federal and state laws and regulations that have created a more equal system of rights. Equal opportunity, full participation, and independent living—three of the four goals of the ADA—seem more like realities for many than in decades past.
Yet, the final goal of the ADA, economic self-sufficiency, still remains far beyond reach for many. Despite progress, relics of the past remain cemented in public policy. One such relic is subminimum wage.2 For people with disabilities, this 85-year-old policy is a roadblock to participating fully and equitably in the workforce.
In 1938, Congress passed a law that created a subminimum wage: a rate of compensation that allows employers to pay people with disabilities as little as pennies per hour. Back then, this was applauded as a step forward to provide employment for people with disabilities, but today, the wage and the attitudes that enable it are seen as unjust and backward. Forward-looking states across the country have been taking steps to eliminate the subminimum wage and to change labor policies to support people with disabilities.
Maine is one example. In 2020, Maine passed legislation3 that eliminated the subminimum wage and adopted the Employment First systems framework, which centers on the idea that all individuals, regardless of support need and disability, should participate in competitive integrated employment.4 Maine also enacted a suite of policies, including Medicaid expansion, tax-advantaged savings accounts, and better counseling on employment benefits. It also applied for and received funds through a federal competitive grant program called the Disability Innovation Fund. Maine now ranks as a top state in the nation for promoting employment for disabled people.
Maine is not alone. Although the subminimum wage policy is often kept in the shadows, for those that know it well, it has been reported on, advocated for and against, been the subject of several Government Accountability Office (GAO) reports in recent years, and largely scrutinized. Despite this attention, few, if any, analyses have been conducted at a national scale to understand the state of the subminimum wage in all 50 states plus the District of Columbia (DC). Data from the Wage and Hour Division of the U.S. Department of Labor (DOL), though available, is inconsistent, cannot be tracked longitudinally, and is only useful when considering how it applies to employers’ use of certificates for a section of the antiquated 1938 law known as 14(c). Those looking to better understand this issue often run into roadblocks when seeking deeper analyses or research.
This report examines, state by state, the policies that drive the use or elimination of subminimum wage, as well as the programs each state provides to more comprehensively support individuals with disabilities as they seek meaningful employment and fair wages. Analyzing and comparing policies across all states allows for a national perspective on the drive to eliminate the subminimum wage. It also highlights other employment-related policies used to support individuals with disabilities. We hope our report not only provides an opportunity for stakeholders to dive into their own state’s policies and practices but helps map out best practices. Whether it is Maine or Mississippi, Oregon or Iowa, our analysis offers evidence of sweeping and often surprising progress. States around the country, blue and red, rural and urban, are making significant headway in lasting ways, leading to an improved quality of life and competitive integrated employment for disabled workers in the United States.
Authored by Lillie Heigl, Kimberly Knackstedt and Elena Silva
Learn more about Medicaid with this virtual "tea time" chat!
Medicaid Matters New York will now host a monthly Tea Time Chat! On the second Tuesday of every month at 7pm, we will host this dedicated time for people who have Medicaid for their health insurance coverage to come together in an evening Zoom meeting. Our first monthly chat will take place this coming Tuesday, May 14th at 7pm. Register here !
When you complete the Zoom registration, you will be registered for each of the monthly evening meetings.
To learn more, go to Medicaid Matters | NY (medicaidmattersny.org)