A call to end Institutional Bias in Attendant Pay Rates

Ivy Kennedy in a wheelchair wearing a t-shirt "#EndInstitutionalBias I am not your cash cow."

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.

Capitalism:
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

Respectfully,
Ivy K.

* Recipients

Mail: 117
Email: 246
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 Kennedy