Articles, Newsletters, Podcasts, and Video
End the institutional bias in Attendant pay rates.
I’m presenting a case for equity in Personal Care Attendants’ pay rates by sending this email*, The low pay of Consumer Directed (CD) in-home Personal Care Attendants has caused my husband not to return to work and is one of the factors of why I resigned from my full-time wage job of over 8 years. Speaking as an Employee Of Record (EOR), for equitable access to Home and Community Based Services (HCBS), close the gap between minimum wage and living wage for CD in-home attendants.
What I’ve experienced/seen:
1. Myself and others can not find Medicaid Consumer (self) Directed personal care in-home attendants because they are not paid anything close to a living wage. A fast food job pays more than an in-home Consumer Directed (CD) attendant job.
Solutions: Close the gap between minimum wage and living wage rates for Consumer (self) Directed Medicaid in-home Personal Care Attendants. In Virginia the gap is $6.23. And/or remove penalties for supplementing a CD attendants pay so I the Employer Of Record, can compete with fast food, etc. To earn a LPN, require nursing school students serve as a CD in-home attendant for 6 months.
2. Stop the split of CD attendant hours when services are through Agency Directed. The split in my CD attendant hours ensures an agency office administration gets paid in the instance when no attendant can be sent to my home. The split of hours was hidden from me when I repeatedly asked how Agency Directed would impact Consumer Directed. When an agency attendant does not come to work, a CD attendant can not submit those hours for payment even though they are doing the work of the agency attendant. Because of agency unprofessionalism and unethical behavior, their attendant turnover rate is extremely high. These agencies are numerous which deplete my hiring pool for a Consumer (self) Directed personal care in-home attendant. Agencies have used my CD attendant hours to be paid when no attendant comes into my home.
When there are one time payments (COVID19 hazard pay) agencies are in charge of getting payments ($1000) to their eligible attendants. Agency attendants may have no knowledge of and/or may not receive these payments because it is left up to the agency. Also agencies are not required to report which of their attendants receive these one time payments. Whereas CD attendants receive one time payments from time they have already summited.
3. Bring back tools to empower people on Consumer Directed such as MySupport. Give individuals an option to pay for a subscription to MySupport to fund it so it won’t be left up to the insurance companies to shut down. There was a long period of time in the past when placing a newspaper ad was affordable. The newspaper ad was $40 and ran for 7 days which resulted in around 50 people calling me for the job.
4. Data – Require survey and feedback opportunities be given to people who use Consumers Directed services and use the data in results/reports, etc. Inequities in attendant pay rates have impacted my quality of life and have impacted my employment goals.
Equable data collection requires transparency. Inequitable attendant pay rates (currently hidden from the public) will show an institutional bias. There is an institutional bias in attendant pay rates because of America’s connection to capitalism.
a. There is no equity in data collection. Correct this … Data is focused on Providers and not Consumers.
b. Correct this … The US Census does not collect any data specifically related to Home and Community Based Services (HCBS) providers or consumers.
c. Require public transparency. Publicly post the hourly pay rates of attendants in the categories:
1. Consumer (self) Directed – Consumer Directed attendant pay rate ranks the lowest.
2. Agency Directed – Currently, attendant pay rates are not required to be reported.
3. Sponsored Residential
4. Group Day Program
5. Group Supported Employment
5. American Culture – Systemic ableism is costing the non-disabled their valuable time. This possibly drives the urge to extreme profit off disability services. “Time is money.” Which is more valuable to the non-disabled, their time or controlling people with disabilities? By design in policy, in too many of the situations, the non-disabled are the gatekeepers to completing tasks (or not), that the disabled are prohibited from doing themselves. It’s to the detriment of people with disabilities if the gatekeeper doesn’t not complete tasks.
a. Private companies are allowed to buy group homes and nursing homes to extreme profit off beds while unknown numbers of people with disabilities are abused and neglected to the point of death.
b. Group homes and agencies are allowed to pay more to their attendants than Consumer Directed. They are not required to report attendant pay rates.
My choice and independence/freedom as an American is paying my CD attendant a living wage.
Redirect funds to pay a living wage to Consumer Directed personal care in-home attendants from these sources:
1. Agency Directed office getting paid when their attendant doesn’t come in to work.
2. Transportation brokers getting paid for each person on Medicaid regardless if that person uses transportation or not (company hub in Georgia). 80% of the time Medicaid transportation fails to take or bring me back home.
3. Revenue from repetitive reviews, surveys, grants, reports. It’s worthy to note these are preformed by people without disabilities.
4. Repeated Evaluations – Eliminate evaluations to use funding on the DD Waiver. To qualify for the DD Waiver I had OT assessments and evaluations These repeated tests are an example of extreme profiling off disability services. (DD Waiver AT funding for a computer requires 6 months of OT)
There is OBRA funding, I don’t know how long that’s going to last or where it comes from. The OBRA funding is left up to City Council to approve or deny each request. Which leaves me dependent on them for tools I use to live in my community.
Why am I not held responsible for finding the lowest cost and submitting receipts for items/services covered by the DD Waiver?
5. Ableism in Healthcare – Due to ableism, I hear the excuse of the “fax is lost”. I have heard it so many times from various entities, over so many years that I get another provider involved which essentially ends with charging insurance twice.
6. Change how insurance charges for physical therapy
a. My disability is not going to disappear overnight or improve. Do away with requiring documentation that states improvements for continuing Physical Therapy. To prevent fraud insurance can send me a proof of life form to notarize and ask me to verify the quality of my Physical Therapist annually.
b. Because Physically Therapy could not rehabilitate my left hip replacement 5 days a week from my home, I stayed in a costly nursing home for a month. At the nursing home the result was I didn’t receive PT 5 days per week.
End the institutional bias in Attendant pay rates. Close the gap between minimum wage and living wage rates for Consumer (self) Directed Medicaid in-home Personal Care Attendants. In Virginia the gap is $6.23
Social Media Platforms: 151
One tweet: 6,548 Views
News Outlets: 11
Link: Number undisclosed by Google
Individualized messages on the coinciding letter:
Legislators: Which party will set aside capitalism (that is extreme profiting disability services) so I (and others) can have properly paid attendant care empowering my employment and quality of life?
Stacey Abrams: Redirect funds to pay CD in-home attendants a living wage from transportation brokers getting paid for each person on Medicaid regardless if that person uses transportation or not (company hub in Georgia).
Warren, Sanders, Wyden, Murray: What’s the latest update on the BrightSpring/KKR acquisition?
U.S. Census Bureau: Collect and report on data from Consumers of Home and Community Based Services.
Judge Gibney, Donald Fletcher: What is the total cost to date for the annual reviews on the
U. S. Department of Justice’s Settlement Agreement with Virginia?
Virginia Department for Aging and Rehabilitative Services: As long as people with disabilities remain unemployed, DRS staff will be employed.
Healthcare recipients: To earn a LPN, require nursing school students serve as a Consumer Directed in-home attendant for 6 months.
VDOE, WJCC Schools: This is the outcome of Sp ED Preschool and of including me in K-12 classes. 1981-1997 in Williamsburg-James City County Public Schools. Regular Diploma.
U.S. Department of Health & Human Services recipients: What is the total number of people with disabilities that died from COVID19 in congregate settings? (group homes, nursing homes, etc)
Moms In Motion: I was employed by you for over 8 years. It was an honor to be in the founders club. Your leadership training strengthened the leadership qualities I already had. I was always a member of your team, I wasn’t put on a pedestal or invisible. I was paid a full wage given opportunities for raises. At my job I found joy in showing people the way. This is my last effort in showing people the way. There’s no retirement from ableism, but I’m going to pretend!
Pearl Jam: Thanks for encouraging me to use my voice when I was young at age 13 (1992), I’m now 43 years old. Thanks for the lyrics, thanks for the music.
WABC-TV, Geraldo Rivera: Willowbrook is still happening. Example: KKR, BrightSpring Health Services, etc.
Isabel Wilkerson: Is this caste or capitalism?
Letter contributed by Ivy Kennedymore
My name is Kendra Scalia and I’m a Hudson Valley Leader with the NY Caring Majority, and a disabled woman using Consumer-Directed Personal Assistance (CDPA) home care services.
Last year at this time I submitted testimony to this Legislature regarding the home care crisis our state continues to ignore. I told you about my experience losing three personal assistants or PAs during the start of COVID and how I had just one PA working seven days per week. I expressed the importance of Fair Pay for Home Care workers – to make it possible to recruit new workers to this field. And I also let you all know that”
“I live in constant fear that should something happen to my personal assistant or should he find a better paying job, my literal independence and freedom will be taken from me overnight.”
I wish I could sit here today and tell you that I’ve hired workers, that I’m able to eat a hot meal every day, and that my fears of institutionalization are quieted. But this body failed to provide the bare minimum attention to slow down the home care workforce crisis last year. And so, today, my fears are being realized. My one PA cut back his hours because he found that better paying job. Not a single candidate in 18 months has accepted a job offer with me for $13.20 per hour. Parts of my independence have been lost, as entire areas of my life I simply can’t engage in.
Testimony by Kendra Scalia of the NY Caring Majority
delivered to the New York State Joint Legislative Budget Hearing on Human Services
in support of the Fair Pay for Home Care Act
Because my one PA can only work four hours at night:
- I’m forced to go without the toilet all day long.
- I stay in the same position in my wheelchair for 20 hours at a time.
- I sleep in my wheelchair five nights per week because I have no one to get me out of bed in the morning.
The limited help I receive is packed with bare essentials of survival, such that therapies and treatments are skipped more frequently than they are provided; medical appointments are all but impossible to attend in-person; and
I’ve developed additional medical conditions that could have been wholly prevented were home care worker wages raised because home care is health care.
If you visited my home today you would find plastic bins holding items like remote controls and zip lock baggies of cashews and cheerios. A dozen opened water bottles with straws line my kitchen table from one corner to the other, allowing me the ability to at least stay hydrated while I spend more than 80% of each day without care.
We need Fair Pay for Home Care in the budget (A.6329/S.5374A). Governor Hochul missed this opportunity in the executive budget – proposing one-time bonuses that will not come close to solving the home care workforce shortage. The solution is Fair Pay for Home Care – and we are relying on YOU, our state legislators, to make this happen in the budget. When our workers are paid well, disabled and senior New Yorkers who rely on these skilled workers to live independently are able to fill these positions. We’re able to receive the health care we need to be safe and stay healthy.
The time is now to address the crisis of long term care. I hope next year I find myself back at this budget hearing to tell you about the fabulous personal assistants I was able to hire after you passed Fair Pay for Home Care in this year’s budget; how my health improved and I no longer need these additional medications; and how comfortable my body feels when I am finally able to lay it down to rest on my soft, warm bed every night once again just like all of you.
The above was oral testimony delivered to the NYS Joint Legislative Budget Hearing on Human Services in support of the Fair Pay for Home Care Act, which aims to raise home care worker wages to 150% of the regional minimum wage (minimum $22.50/hr) in NYS and provides mechanisms for provider reimbursement rates such that privatized Medicaid plans are required to meet the new minimum wage in their reimbursement negotiations with agencies. The Caring Majority is a group of disabled individuals, seniors, home care workers, family caregivers, home care providers, fiscal intermediaries and disability organizations coming together to address the healthcare crisis in NYS. To learn more about the NY Caring Majority and the Fair Pay for Home Care Act: NY Caring Majority F nycaringmajority.org
I have been using Consumer Directed (CD) Personal Care Attendant services for over two decades. I’m writing this letter about the lack of equity between CD in home pay rates and group home pay rates.
Consumer Directed Personal Care Attendant services were already broken
COVID19 has exacerbated systems such as CD Personal Care Attendant services that were already broken. A Medicaid Consumer Directed Attendant paycheck has never been close to a living wage pay rate. What that translated to during COVID19 is I could not find attendants to assist me with activities of daily living in my home. Inequitable attendant pay rates created barrier to me to access Home and Community Based Services (HCBS).
The Department of Justice investigated Virginia’s compliance with both The Americans with Disabilities Act (ADA) and the U.S. Supreme Court’s ruling, the Olmstead decision. On January 26, 2012, the DOJ and Virginia and reached a settlement agreement. The result was institutions (known as training centers) closed, and group homes were opened. The choice to answer the DOJ settlement agreement was to downsize Virginia’s institutions to group homes.
It’s apparent Virginia is continuing its institutional bias.
The setting of where an individual receives attendant services should not dictate pay rates.
Currently, group home attendants are paid more than in home attendants.
Stop incentivizing (paying more, sign on bonuses, etc.) for serving people with disabilities in institutional type settings, such as group homes.
End institutional bias by paying Consumer Directed (CD) in home attendants a living wage. Support policy that shows equity in accessing Home and Community Based Services (HCBS).
Due to the institutional bias that is shown in inequitable attendant pay rates, people with disabilities died of COVID19 in nursing homes and group homes.
Disabled lives are so devalued that there are no statics on how many people died of COVID19 in nursing homes.
Caring for people in their home would’ve lowered the death rate in nursing homes.
On January 7, 2022, the Centers for Disease Control and Prevention (CDC) Director Dr. Rochelle Walensky spoke on ABC’s Good Morning America. Her comment could be viewed as Ableist when referring to groups of people with disabilities or have chronic illnesses as “unwell to begin with”. Systemic Ableism negatively impacts in home attendant pay rates during state and federal budgeting time.
Payment goes directly to group home and agency owners making it impossible to know what they pay their attendants.
Group home and agency owners are not regulated on what amount they pay their attendants. In most cases, the attendant’s pay rate is lowered and the difference goes to “the office”. From the lack of data that office could be the size of a coat closet. I can tell you from my experience the admins in the office miscommunicate, are unprofessional, disorganized and have no leadership skills to properly train and manage attendants. I’ve also seen them mistreat attendants to the point that attendants quit.
When there is one time payments like during COVID, the agency is in charge of getting payments ($1000) to their eligible attendants. Attendants may have no knowledge of and/or may not receive these payments. It is left up to the agency to report which of their attendants receive these one time payments. That’s a huge level of trust to the agencies bolstered with institutional bias. CD attendants receive one time payments from time they have already summited.
Take that in and then consider my side. I can have my DD Wavier revoked if I supplement attendant pay to compete with group home and agency pay rates. The agencies are easy to start up (due to lack regulations) that there are so many of them and they are drawing attendants in at such speed that it depletes my CD hiring choices. My CD hours are permanently split for the duration I’m with an agency. If the agency attendant does not come to work, my CD attendant can’t claim those hours even though they are doing the work of the attendant who no showed.
“The office” is paid those hours that their attendant did not come to work, (Isn’t that Medicaid fraud)?
This is not equity in using Home and Community Based Services (HCBS)
This is not equity in using Home and Community Based Services (HCBS).
Not knowing what agencies and group homes are paying their attendants further accentuates the the existence of institutional bias. Because group home and agency owners are not regulated on what amount they pay, you can’t see their attendant’s pay rate in charted data.
Their rate is shown as a lump sum, of admin cost, etc. I want realtime public transparency of attendant pay rates of all operating providers, group homes, agency and Consumer Directed in a per hour format.
Profiteering from caring for disabilities in this way is a slippery downward slope.
I want a seat at the table as an individual who uses Consumer Directed attendant services
Data/feedback/surveys from people who use Consumer Directed (CD) attendant services are not collected by Department of Behavioral Health and Developmental Services (DBHDS) because a person who uses CD services is not a provider. I want a seat at the table as an individual who uses Consumer Directed attendant services.
How can my voice (and others) be heard when the focus is on providers? Failure to collect data from Consumer Directed users also leads to failure to disseminate valuable tools to empower attendants and people with disabilities. MySupport was a website much like Match.com that connected people on specific shared individual characteristics. Attendants could find work and people could search for attendants. Managed Care Organizations (MCOs) stopped funding MySupport because not enough people were using the site.
I would like to know how much money Virginia spent advertising MySupport? I’d say MySupport failed in Virginia because there’s no list of individuals who use Consumer Directed services. I want nursing students to spend 2 months as a Consumer Directed Personal Care Attendant in their community before Nursing Schools issues LPN licenses. With all schools on board it would greatly help the CD attendant situation while providing an hands on experience for students. I have use online job boards at my local college with no results. I need the Virginia Board of Nursing to put my idea into action for it to be a success.
My husband can’t return to the workforce because how bad it’s gotten with Personal Care Attendants.
On a personal note, my husband can’t return to the workforce because how bad it’s gotten with Personal Care Attendants. Factors that contributed to my decision to resign from my job were the problematic situations I’ve described in this letter. Systematic Ableism has a impact on the economy. I’m asking for equity in Personal Care Attendants pay rates to end the institutional bias.
The opinions expressed here are solely those of the author.
Letter contributed by Ivy Kennedymore
As America moves towards pandemic recovery it is essential now more than ever that we make massive investments in expanding access to Home-Community Based Services (HCBS) for kids and adults with autism and other developmental disabilities regardless of IQ, or at risk of institutionalization. Our service system must be reformed into a pro-active system that enables people with disabilities and their families to get access to HCBS without being put on wait lists for decades or needing to be in crisis to get services. Community Living has been shown to be safer than segregated settings like day programs, group homes, institutions, and so forth. In addition when people like me live in the community we often live longer and have better health, life outcomes. The COVID19 pandemic proves this when we look at COVID19 risk in segregated settings compared to those who self direct their services who may have lower risk of the virus.
As we reform our system it is essential that we move from a system centered model to a truly person centered system that supports self determination, self direction, individualized support in the community.
In order to make this happen we must invest in affordable accessible housing, public transit, and a highly trained Direct Support Workforce that is paid livable wages , decent benefits like paid sick days, leave, vacation days, tuition reimbursement, and so forth. Along with access to paid training on a variety of topics like autism, effective job coaching, self determination, self advocacy, health disparities, health promotion and much more. Being paid a livable wage is a human right. A nation is judged by how a society treats its most vulnerable. A long term care expansion is essential given that COVID19 is going to lead to more people becoming disabled due to Long COVID. Disability is a natural part of the human experience and we must plan for a society that can accommodate the challenges that come with being disabled.
On a personal level expanding access to HCBS and allowing us to buy into it and get access to HCBS via Medicaid state plan would make my life easier. As a person with autism, anxiety, ADHD, insomnia having access to HCBS would make my life easier in that it would allow me to get support with things like cleaning, budgeting, organizing, technology support, dealing with life transitions, stress management, medical management, managing public benefits, resolving tax issues and other complex problem that come up on a day to to day basis. Along with transportation to places not easily accessible via public transit. In the area of employment support expanding HCBS for all adults with autism would allow people like me to get job coaching that is critical to my success as a professional Disability Rights Advocate when it comes to various work tasks like drafting meeting agendas, dealing with computer malfunctions, editing written briefs on challenging topics like doctor house call interviews and so forth. In addition to things like facilitating meetings, organizing files, preparing and creating presentations, editing,writing things in plain English, managing deadlines to name a few.
When I lived in Vermont and got HCBS services I self directed my waiver and found self direction to be very empowering. It is vital that we expand self direction and resources available to support people who self direct their services in hiring, and retaining high quality job coaches and support staff that are critical in keeping my anxiety and stress to a minimum. Self Direction is one of the safest models in the era of COVID19.
MAKE AMERICA RELAX, MAKE AMERICA LESS STRESSED