- Letter
- Individualized messages
- Recipients
- Picture
- Responses
- Results
- Video
- Final Thoughts
- Individualized messages
- Recipients
- Picture
- Responses
- Results
- Video
- Final Thoughts
Letter:
December 27, 2022
December 27, 2022
End the institutional bias in Attendant pay rates.
I'm presenting a case for equity in Personal Care Attendants pay rates in this letter.
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. (as of 12/12/22) 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 submitted.
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 make 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 performed 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.
Individualized messages posted 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?
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.
Individualized messages posted 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?
Recipients:
Mail: 117
Email: 1013
Social Media Platforms: 151
One tweet: 6,548 Views
News Outlets: 11
Link: Number undisclosed by Google
Mail: 117
Email: 1013
Social Media Platforms: 151
One tweet: 6,548 Views
News Outlets: 11
Link: Number undisclosed by Google
Mailed (in some cases multiple) individuals at:
Local, State & Federal Legislators
Virginia House Appropriations Committee, The Honorable Barry D. Knight, Senator Tammy Duckworth, White House Office of Science and Technology Policy, Senate CMTE on Health, Edu, Labor & Pensions, Senator Bernie Sanders, Senator Patty Murray, Va Dept of Medical Assistance Services, Va Board for People with Disabilities, The Honorable John A. Gibney Jr., The Arc of the United States, The Arc of Virginia, National Council on Independent Living, Va State Rehabilitation Council, U.S. Department of Labor, Wilson Workforce and Rehabilitation Center, Va Beach Dept of Human Services, U.S. Bureau of Labor Statistics, Equal Employment Opportunity Commission, SEIU Virginia 512, Disability Rights California, National Council of State Boards of Nursing, Virginia Hospital & Healthcare Association, Sentara College of Health Sciences, Virginia Department of Education, Uni Cts 4 Excellence in Developmental Disabilities, DisDATA - Disability Data Advocates Taking Action, United States Dept of Health and Human Services, National Institute on Disability, Westchester Institute for Human Development, Ten Club, Eggleston Services, Hope House Foundation, The Consortium of Citizens with Disabilities, University of Kansas, Justice in Aging, Center for American Progress, Special Olympics, Michael J. Fox Foundation Parkinson's Research, Faith Inclusion Network, CBS Sunday Morning, Daily Press,Virginia Capitol Connections, StoryCorps, NPR WHRV / WHRO, WABC-TV & Geraldo Rivera, Institute for Women's Policy Research, Administration on Community Living, Virginia Senate Finance & Appropriations CMTE, Senator Bob Casey, Stacey Abrams, White House Office of Management & Budget, White House Office of Disability Employment Policy, Senator Elizabeth Warren, Senator Ron Wyden, U.S. Census Bureau, Va Dept of Behavioral Health & Devt Services, Centers for Medicare & Medicaid Services, Independent Reviewer- DOJ institution settlement, National Council on Disability, The Arc of Northern Virginia, Va Statewide Independent Living Council, Endependence Center, Inc., Va Dept for Aging and Rehabilitative Services, Ca Foundation for Independent Living Centers, United States Department of Labor, National Center for Health Statistics, Service Employees International Union, American Civil Liberties Union, Senior and Disability Action, Virginia Board of Nursing, My Care Coordinator for CCC Plus, Health Equity Dept at local Sentara Healthcare, Williamsburg-James City County Public Schools, Association of University Centers on Disabilities, Va Partnership for People with Disabilities, Administration for Community Living, Moms In Motion, Ford Foundation, University of Alaska Fairbanks, National ADAPT, Support Services of Virginia Inc., Brandeis University, Caring Across Generations, American Association of People with Disabilities, Diversability Leadership Collective, Christopher & Dana Reeve Foundation, Virginia Wesleyan University, Random House Publicity, The Virginian-Pilot, Richmond Times-Dispatch, Disabilities United Assoc - Disability News Wire, National Public Radio, WAVY TV 10 and WVBT FOX43 TV, Virginia Program Manager/Waiver Operations, Centers for Disease Control and Prevention, Va Provider Reimbursement Rate Setting Manager
Picture included with each letter:
Picture description - Female with blonde hair sitting in a power chair wearing a black shirt that reads, #EndInstitutionalBias I'm not your cash cow.
Picture description - Female with blonde hair sitting in a power chair wearing a black shirt that reads, #EndInstitutionalBias I'm not your cash cow.
Responses:
The Virginian-Pilot & Daily Press wouldn't print it because I had sent it in to other news sources making it not exclusive.
Emily Rosenoff
Director, Division of Long-Term Services and Supports Policy
Office of Behavioral Health, Disability and Aging Policy (BHDAP)
HHS Office of the Assistant Secretary for Planning and Evaluation (ASPE)
Director, Division of Long-Term Services and Supports Policy
Office of Behavioral Health, Disability and Aging Policy (BHDAP)
HHS Office of the Assistant Secretary for Planning and Evaluation (ASPE)
My question:
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.)
Answer:
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.)
Answer:
That said, this brief by the Kaiser Family Foundation estimates the number of deaths from COVID of residents and staff in congregate settings as of February 2022. They estimate that 200,000 residents and staff had died from COVID as of January 2022.
Heidi Lawyer
Retired Executive DirectorExecutive Director
Virginia Board for People with Disabilities
Via Linkedin message: Very powerful. Thank you for sharing. I’m sorry you and so many others continue to suffer experience this.
My reply: Thanks for reading. Suffering? That's a word to put people with disabilities in their place.
Retired Executive DirectorExecutive Director
Virginia Board for People with Disabilities
Via Linkedin message: Very powerful. Thank you for sharing. I’m sorry you and so many others continue to suffer experience this.
My reply: Thanks for reading. Suffering? That's a word to put people with disabilities in their place.
Kylie Garber
Legislative Fellow, Health, Education, Labor, and Pensions Committee
Legislative Fellow, Health, Education, Labor, and Pensions Committee
Senator Tim Kaine
We talked on a phone call for about 5 minutes. She asked near the end of our conversation what was the one thing I'd like to see done. My answer was to stop the split of CD attendant hours when services are through Agency Directed.
We talked on a phone call for about 5 minutes. She asked near the end of our conversation what was the one thing I'd like to see done. My answer was to stop the split of CD attendant hours when services are through Agency Directed.
Senator Mark Warner
I received a letter in my mailbox. To summarize: My concerns (stated in my letter) fall outside the jurisdiction of the U.S. Senator.
I received a letter in my mailbox. To summarize: My concerns (stated in my letter) fall outside the jurisdiction of the U.S. Senator.
Centers for Medicare & Medicaid Services, Department of Medical Assistance Services, Department of Behavioral Health and Developmental Services
A 45 minute online conference with two people discussing my letter. With regards to what my letter explained about Agency Directed services, I said I'd kept a timeline of what went on, no attendants sent to me, unprofessional behavior, etc. The two people in the conversation were interested so I emailed them the timeline. In my email I asked if they knew of any paid advisory positions to let me know. I included a link to my Linkedin profile to show my experience and worth.
A 45 minute online conference with two people discussing my letter. With regards to what my letter explained about Agency Directed services, I said I'd kept a timeline of what went on, no attendants sent to me, unprofessional behavior, etc. The two people in the conversation were interested so I emailed them the timeline. In my email I asked if they knew of any paid advisory positions to let me know. I included a link to my Linkedin profile to show my experience and worth.
Service Employees International Union (SEIU)
Email response on behalf of President Henry saying, "the International Union does not have the authority to interfere in or review the issues that you brought to our attention."
Email response on behalf of President Henry saying, "the International Union does not have the authority to interfere in or review the issues that you brought to our attention."
Michael Cutler
Division of Program Operations
Medicaid and CHIP Operations Group
Centers for Medicare and Medicaid Services (CMS)
He responded with an email. "each state sets its own rate for reimbursing a Medicaid-covered service provider, including Personal Care rates."
My response: Thanks for your reply to my letter. Then I summarized CD Service Authorization pends that resulted in no pay for my attendant for nearly three months.
Division of Program Operations
Medicaid and CHIP Operations Group
Centers for Medicare and Medicaid Services (CMS)
He responded with an email. "each state sets its own rate for reimbursing a Medicaid-covered service provider, including Personal Care rates."
My response: Thanks for your reply to my letter. Then I summarized CD Service Authorization pends that resulted in no pay for my attendant for nearly three months.
Results:
Administration for Community Living
Administration for Community Living
Email to acquaintances June 27, 2023:
Hello,
I'm sharing the interaction I've had from ACL. This communication was sparked by a letter I mailed in December 2022 about institutional bias in in-home attendant pay rates.
I believe ACL is earning extreme profits off of disability services. These profits could be redirected to pay Personal Care Attendants a living wage. I've also learned from this interaction that there are no groups representing/for Consumers at the Federal level.
Thank you,
ik
Hello,
I'm sharing the interaction I've had from ACL. This communication was sparked by a letter I mailed in December 2022 about institutional bias in in-home attendant pay rates.
I believe ACL is earning extreme profits off of disability services. These profits could be redirected to pay Personal Care Attendants a living wage. I've also learned from this interaction that there are no groups representing/for Consumers at the Federal level.
Thank you,
ik
Angela Parker
Special Assistant for the Deputy Assistant Secretary Jennifer Sheehy at the Office of Disability Employment Policy
Her reply listed what groups have formed "to improve the quality of caregiving jobs as a priority and has recognized that increasing caregiver wages is critical to bolstering the caregiving workforce. As you noted from your own experiences, inadequate direct care staffing puts the health, safety, and well-being of people with disabilities at risk, and can lead to lost opportunities for employment and community participation"
Special Assistant for the Deputy Assistant Secretary Jennifer Sheehy at the Office of Disability Employment Policy
Her reply listed what groups have formed "to improve the quality of caregiving jobs as a priority and has recognized that increasing caregiver wages is critical to bolstering the caregiving workforce. As you noted from your own experiences, inadequate direct care staffing puts the health, safety, and well-being of people with disabilities at risk, and can lead to lost opportunities for employment and community participation"
I replied thanking her and asked how I, a Consumer could be a member of those groups. (in my mind I was thinking... I've tried to join these groups before. They haven't let me because that's how they earn a paycheck. I'm not voting for President again until Consumers are counted at the Federal level.)
My email to her:
Hello,
I have talked to employees of ACL via a national advocacy group I'm a member of, named disDATA. I have attended online meetings hosted by National Institute on Disability
Independent Living and Rehabilitation Research which as I understand to be a division of Administration for Community Living. From my perspective, the Administration for Community Living falls under "Profiting off disability services", which was listed under "Redirect funds to pay a living wage to Consumer Directed personal care in-home attendants" in my letter.
Thank you,
ik
Hello,
I have talked to employees of ACL via a national advocacy group I'm a member of, named disDATA. I have attended online meetings hosted by National Institute on Disability
Independent Living and Rehabilitation Research which as I understand to be a division of Administration for Community Living. From my perspective, the Administration for Community Living falls under "Profiting off disability services", which was listed under "Redirect funds to pay a living wage to Consumer Directed personal care in-home attendants" in my letter.
Thank you,
ik
Angela asked if I had called ACL. I asked what's the direct phone number for the Administration for Community Living’s Technical Assistance Center. I told Angela I do remember mailing my letter to Administration for Community Living’s (ACL) Technical Assistance Center. I have not heard back from them.
I asked (via email) Angela for the direct phone number for the Administration for Community Living’s Technical Assistance Center. I asked twice with 7 days in between.
On April 14 Angela said in an email to me, "Currently there are no consumer groups."
5/4/23 email:
Hello Angela,
Thank you for that information.
I called Administration for Community Living: (202) 401-4634
i pressed 5 for independent living research
i left a message with my phone number. I said I was a Consumer looking to get involved.
Regional office information I found at the link you provided. Please share with me the direct phone number for Laura House. I've reached out to my Administration for Community regional office. There was no phone number for Laura House on ACL's website so looked that up. I could not find it so I left a message with the office of the administrator by using the prompt at Administration for Community Living at (202) 401-4634
Laura House
Regional Administrator
801 Market Street
Philadelphia, PA 19107
I did not see a contact number or email address for Administration for Community Living’s (ACL) Technical Assistance Center at the link you provided. Please share their phone number with me and I will call them.
Can you please tell me if this resource center has formed? Or when the resource center will be formed? "ACL has awarded a cooperative agreement totaling an estimated $3.25 million over five years to create a national technical assistance and resource center that will improve support for people with co-occurring intellectual and developmental disabilities (I/DD) and mental health needs so they can live and participate in their communities" ACL Announcement from September 30, 2022.
Thank you for your time,
ik
Hello Angela,
Thank you for that information.
I called Administration for Community Living: (202) 401-4634
i pressed 5 for independent living research
i left a message with my phone number. I said I was a Consumer looking to get involved.
Regional office information I found at the link you provided. Please share with me the direct phone number for Laura House. I've reached out to my Administration for Community regional office. There was no phone number for Laura House on ACL's website so looked that up. I could not find it so I left a message with the office of the administrator by using the prompt at Administration for Community Living at (202) 401-4634
Laura House
Regional Administrator
801 Market Street
Philadelphia, PA 19107
I did not see a contact number or email address for Administration for Community Living’s (ACL) Technical Assistance Center at the link you provided. Please share their phone number with me and I will call them.
Can you please tell me if this resource center has formed? Or when the resource center will be formed? "ACL has awarded a cooperative agreement totaling an estimated $3.25 million over five years to create a national technical assistance and resource center that will improve support for people with co-occurring intellectual and developmental disabilities (I/DD) and mental health needs so they can live and participate in their communities" ACL Announcement from September 30, 2022.
Thank you for your time,
ik
4/19/23
Lauren Piraino
Advisor to the U.S Commissioner on the Administration on Disabilities
Lauren Piraino replied to the link to my letter via Linkedin message. She emailed me too. In my email reply to her I said, "How can I, a Consumer get involved at the federal level? Currently, data collection doesn't count Consumers. The US Census does not collect any data specifically related to Home and Community Based Services (HCBS) providers or consumers."
I followed up with Lauren on email. She did not answer my question. My question: How can I, a Consumer get involved at the federal level?
Lauren Piraino
Advisor to the U.S Commissioner on the Administration on Disabilities
Lauren Piraino replied to the link to my letter via Linkedin message. She emailed me too. In my email reply to her I said, "How can I, a Consumer get involved at the federal level? Currently, data collection doesn't count Consumers. The US Census does not collect any data specifically related to Home and Community Based Services (HCBS) providers or consumers."
I followed up with Lauren on email. She did not answer my question. My question: How can I, a Consumer get involved at the federal level?
Lauren emailed me on 5/3/23 and asked me to email her at ********** I did and included my phone number.
I called her the next day. I use the number included on her email signature. She called me back, we spoke. She also said not to call her at that number.
I called her the next day. I use the number included on her email signature. She called me back, we spoke. She also said not to call her at that number.
6/27/23
Still no answer from Lauren Piraino. I've emailed her four times.
The State
I accepted an invitation to join a workgroup. The workgroup’s title is DD Systems Issue Resolution Workgroup (DDSIRW). DDSIRW is a workgroup hosted by Department of Behavioral Health and Developmental Services that gives recommendations to Department of Medical Assistance Services.
Still no answer from Lauren Piraino. I've emailed her four times.
The State
I accepted an invitation to join a workgroup. The workgroup’s title is DD Systems Issue Resolution Workgroup (DDSIRW). DDSIRW is a workgroup hosted by Department of Behavioral Health and Developmental Services that gives recommendations to Department of Medical Assistance Services.
My comments I have given during Developmental Disability Systems Issues Resolution Workgroup (DDSIRW) - Subcommittee System Transformation Workgroup (SIRW) meetings:
November 17, 2023
DMAS and the General Assembly’s budget determine attendant pay rates.
Please explain why PCA/DSP (Personal Care Attendants / Direct Support Professionals) pay rates are different in the 5 care settings? Also please explain why the Consumer Directed in-home attendant pay rate is the lowest of the 5?
DMAS and the General Assembly’s budget determine attendant pay rates.
Please explain why PCA/DSP (Personal Care Attendants / Direct Support Professionals) pay rates are different in the 5 care settings? Also please explain why the Consumer Directed in-home attendant pay rate is the lowest of the 5?
Michelle Guziewicz said at the June 27, 2023 DDSIRW subcommittee SIRW meeting how many Consumers there are ... there are around 16,000 Consumers in Virginia. Fund a report to show how many Consumers have hired a Consumer Directed attendant (who lives outside the home) by using annual data going back ten years. Use this data to end inequitable / institutional bias attendant pay rates in the 5 care settings and support redirecting funds to continuously pay Consumer Directed in-home personal care attendants the same or more than what a fast food employee earns.
I’m asking because the reports I’ve seen are in favor of getting Providers funding and no reports in favor of Consumers.
What I’m ultimately asking for is representation of/for Consumers.
I’m asking because the reports I’ve seen are in favor of getting Providers funding and no reports in favor of Consumers.
What I’m ultimately asking for is representation of/for Consumers.
During a Service Authorization pend, do not stop attendant pay for something the Consumer / Employee of Record is not at fault for, instead stop payment to DD Waiver Support Coordinator and Service Facilitator for that one Consumer.
Consulate the tasks of
- CCC Plus Care Coordinator
- DD Waiver Support Coordinator
- Service Facilitator
into a job for one person. Redirected the saved revenue towards a living wage for Consumer Directed in-home personal care attendants.
- CCC Plus Care Coordinator
- DD Waiver Support Coordinator
- Service Facilitator
into a job for one person. Redirected the saved revenue towards a living wage for Consumer Directed in-home personal care attendants.
When Consumers report to The State (DBHDS, DMAS) of a CCC Plus Care Coordinator, DD Waiver Support Coordinator, Service Facilitator, Agency Directed Provider not doing their job, dock that persons pay and redirect that money towards paying CD in-home attendants at least the same or more than what a fast food employee earns.
This can be verified on a web portal.
This can be verified on a web portal.
Stop the split of hours when a Consumer is receiving attendant services through Agency Directed so the option is open for Consumers to have their Consumer Directed attendants paid for hours worked when there is an absent Agency Directed attendant.
Put in place a procedure for when Consumers report to The State (DBHDS, DMAS) on dates an Agency Directed attendant doesn’t come in to work, and tell the Consumer what action has been taken.
What will the purposed surveys for Customers to fill out be used for? Will survey results be public? (rating Providers survey. mentioned during last meeting)
As long as there’s an institutional bias within the system of in-home care, I as a person with a disability I cannot in good conscience continue to be a member of this group.
In terms of disability, when control is taken away by a higher caste, from a lower caste that lower caste is abused and/or often dies.
Institutional bias generates revenue for the non-disabled while simultaneously forcing people with disabilities downwards in an ableist system to our deaths.
Institutional bias generates revenue for the non-disabled while simultaneously forcing people with disabilities downwards in an ableist system to our deaths.
I resign from DDSIRW/SIRW.
Please remove me from your email lists. Thank you.
Please remove me from your email lists. Thank you.
September 19, 2023
What input/recommendations given by the members of this group been submitted to DMAS?
What input/recommendations given by the members of this group been submitted to DMAS?
Michelle Guziewicz said at the June 27, 2023 DDSIRW subcommittee SIRW meeting how many Consumers there are ... there are around 16,000 Consumers in Virginia. Fund a report to show how many Consumers have hired a Consumer Directed attendant (who lives outside the home) by using annual data going back ten years. Use this data to end inequitable / institutional bias attendant pay rates in the 5 care settings and support redirecting funds to pay Consumer Directed in-home personal care attendants, at least $15 per hour.
I’m asking because the reports I’ve seen are in favor of getting Providers funding and no reports in favor of Consumers.
If the number of Consumers are known, during a Service Authorization pend, stop payment to the Service Facilitator and DD Waiver Support Coordinator for that one Consumer. Do not stop payment to a Consumer Directed in-home attendant during a pend.
What I’m ultimately asking for is representation of/for Consumers.
I’m asking because the reports I’ve seen are in favor of getting Providers funding and no reports in favor of Consumers.
If the number of Consumers are known, during a Service Authorization pend, stop payment to the Service Facilitator and DD Waiver Support Coordinator for that one Consumer. Do not stop payment to a Consumer Directed in-home attendant during a pend.
What I’m ultimately asking for is representation of/for Consumers.
Consulate the tasks of:
- CCC Plus Care Coordinator
- DD Waiver Support Coordinator
- Service Facilitator
into a job for one person. Redirected the saved revenue towards a living wage for Consumer Directed in-home personal care attendants.
- CCC Plus Care Coordinator
- DD Waiver Support Coordinator
- Service Facilitator
into a job for one person. Redirected the saved revenue towards a living wage for Consumer Directed in-home personal care attendants.
Employee of Record and/or Consumers to be reported back to on what was done when they submit to the DMAS on what dates Agency Directed attendants don’t come into work.
Stop the split of hours when a Consumer is receiving attendant services through Agency Directed so the option open is there for Consumers to have their Consumer Directed attendants paid for hours worked when there is an absent Agency Directed attendant.
When a Service Authorization is put on pend, attendant pay stops. The State has 30 days to review one pend. There can be multiple pends. Shorten the 30 days to 7. For me, this happened two years in a row. My CD attendant did not receive pay for two months. Do not stop attendant pay for something the Consumer / Employee of Record is not at fault for, instead stop payment to DD Waiver Support Coordinator and Service Facilitator for that one Consumer.
DD Waiver Support Coordinator needs to give the Consumer documentation of everything funded by the DD Waiver because this documentation is needed at times and the DD Waiver Support Coordinator and/or the State can’t find it.
A web portal for all involved would be helpful but is not a guarantee for the Consumer that the people in charge do their job so Consumers have no gap in attendant services. If designed to, one of the many uses of a web portal should also include a function to decrease audits.
July 27, 2023
Michelle Guziewicz said how many Consumers there are at the last meeting...There are around 16,000 Consumers in Virginia.
Can a report be funded to show how many Consumers have hired an attendant (who live outside the home) by using annual data going back ten years. This data will be used to show the requirement to end inequitable attendant pay rates in the 5 care settings and to show that funds must be redirected to pay CD in-home attendants at least $15 per hour.
I’m asking because the reports I’ve seen are in favor of getting Providers funding and no reports in favor of Consumers.
If the number of Consumers are known, during a Service Authorization pend, stop payment to the Service Facilitator and DD Waiver Support Coordinator for that one Consumer. Do not stop payment to a Consumer Directed in-home attendant during a pend.
To go with my comment ... What I’m ultimately asking for is representation of/for Consumers.
Michelle Guziewicz said how many Consumers there are at the last meeting...There are around 16,000 Consumers in Virginia.
Can a report be funded to show how many Consumers have hired an attendant (who live outside the home) by using annual data going back ten years. This data will be used to show the requirement to end inequitable attendant pay rates in the 5 care settings and to show that funds must be redirected to pay CD in-home attendants at least $15 per hour.
I’m asking because the reports I’ve seen are in favor of getting Providers funding and no reports in favor of Consumers.
If the number of Consumers are known, during a Service Authorization pend, stop payment to the Service Facilitator and DD Waiver Support Coordinator for that one Consumer. Do not stop payment to a Consumer Directed in-home attendant during a pend.
To go with my comment ... What I’m ultimately asking for is representation of/for Consumers.
What I remember saying out loud during the meeting:
On the purposed Training Academy, pay Consumers to train Attendants. Consumers/ Employees Of Record train already Attendants for no cost. I’ve used Agency Directed attendants off and on for over twenty years. They had training, certification, etc .... those things made no difference in the quality of care.
It can be important to ask people with disabilities to share their story though the non-disabled who ask need to be aware of exploitation and burnout.
A web portal for all involved would be helpful but is not a guarantee for the Consumer that the people in charge do their job so Consumers have no gap in services.
June 27, 2023
Are the suggestions we gave and were then noted in a spreadsheet going to be included in the June 2023 review?
Are the suggestions we gave and were then noted in a spreadsheet going to be included in the June 2023 review?
What type of verification process will the State have so Consumers can sign off on submitted Agency Directed hours? How will EORs/Consumers be reported back to when they submit to the State what dates Agency Directed attendants don’t come into work? are there penalties for agencies when they bill for time when no attendant was sent?
(Stop the split of hours when a Consumer is receiving attendant services through Agency Directed so the option is there for Consumers to have their CD attendants paid for hours worked when there is an absent Agency Directed attendant.)
(Stop the split of hours when a Consumer is receiving attendant services through Agency Directed so the option is there for Consumers to have their CD attendants paid for hours worked when there is an absent Agency Directed attendant.)
Stop pay to the Provider for that one Consumer during Service Authorization pends. What’s the minimum amount of days a Service Authorization is reviewed again after a pend? Is there a maximum amount of pends, if so what is that?
How many Consumers are in Virginia?
"each state sets its own rate for reimbursing a Medicaid-covered service provider, including Personal Care rates." said Michael Cutler - Division of Program Operations Medicaid and CHIP Operations GroupCenters for Medicare and Medicaid Services (CMS)
2/28/23 Quote in an email to me.
From that quote my question is:
The attendant pay rates increase with how the care setting most resembles an institution. What will DMAS and DBHDS do to make attendant pay rates equitable for full access to Home and Community Based Services / Olmstead Decision?
2/28/23 Quote in an email to me.
From that quote my question is:
The attendant pay rates increase with how the care setting most resembles an institution. What will DMAS and DBHDS do to make attendant pay rates equitable for full access to Home and Community Based Services / Olmstead Decision?
Fast food employees earn $15 per hour compared to 12.70 for CD attendants. As an Employee of Record I need to supplement $3 per hour to find and retain quality attendants. I’m worth $15 per hour, my care and my attendants are worth $15 per hour.
April 28, 2023
As a Consumer I ask for a way to see what hours Agencies bill to Medicaid. Currently I don’t know if Agencies are being paid for hours not worked. Currently, Consumers aren't given an opportunity to verify that agencies are billing for the correct amount of hours.
As a Consumer I ask for a way to see what hours Agencies bill to Medicaid. Currently I don’t know if Agencies are being paid for hours not worked. Currently, Consumers aren't given an opportunity to verify that agencies are billing for the correct amount of hours.
Instead of stopping attendant pay during a Service Authorization pend(s) stop pay to the Provider for that one Consumer.
What can give Consumers control during an annual Service Authorization? State the reason for a pend to the Consumer. (accountability on submitted on correct date, transparency for reason for pends, etc)
Shorten the Service Authorization pend from 30 days to 7 days. Pends result in no attendant pay.
Is this group a part of CMS Proposes Rule to Improve Access to and Quality of Medicaid Services?
Count Consumers too.
March 21, 2023
Please share “ideas that might alleviate administrative burden for providers”, Todd Cramer March 10, 2023 DDSIRW email.
As a Consumer as well as the Employee of Record, I ask the State to change three policies to lessen administrative work load:
1.
State reason for Service Authorization pends and shorten the 30 days to 7 days. (Currently, a CD Service Authorization cannot be resubmitted 30 days after it was pended.) Transparency on the reason for the pend(s) will give insight immediately to Providers on what corrections are needed administratively. Reasons stated for each pend will save administration time for Service Facilitators.
For me, the current "30 day rule" has resulted in no attendant pay for three months which leaves me, the Consumer vulnerable to an institutional care setting. (two consecutive pends resulted in no attendant pay from January 9 2023 to March 17 2023) To prevent Systemic Ableism, if it’s policy to stop attendant payment due to a pend, then the State should stop being paid for the duration of a pend(s) as well.
2.
Stop the split of hours when a Consumer is receiving attendant services through Agency Directed. This would save time for the DD Waiver Support Coordinator because no “split hours” administrative work would have to be done. This would also ensure for the Consumer that Agency administrators are not being paid for hours when no attendant is sent to the home. This change also leaves the option open for Consumers to have their CD attendants paid for hours worked when there is an absent Agency Directed attendant.
3.
To lessen administrative work for Employees of Record, close the gap between minimum and living wage for Consumer Directed in-home attendants. This would alleviate attendant turnover rate for Consumers, thus decreasing the Employee of Record’s new attendant registration packets being received and processed (administrative work) by Fiscal Agents.
What I remember saying out loud at the March 21, 2023 online meeting:
- Respite should go to the attendant of Employee Of Record's choice. Currently respite is only for the Unpaid Primary Caregiver. To have an Unpaid Primary Caregiver as a requirement for CD services is not Independent Living for a person over 18 years old.
- Bring back MySupport.com. Cover costs by Consumers and Employers Of Record paying for a subscription. MySupport.com was a custom matching online system that gave both Attendants and Consumers recommended matches by asking both people questions about their support preferences and values.
No matter what changes are made by the State, this will remain:
- Providers and the State will be paid
- Consumers will not be paid (Which in Western Culture equates to people with disabilities have no worth, no value but to be a paycheck for Providers if Providers see it's worth their time. This social construct also explains why Todd Cramer used the word "burden" in his March 10, 2023 DDSIRW email.)
Peer Driven Media
Disability Media Wire / Disabilities United Association published my letter.
My Video:
https://youtu.be/_UAfZgtRKEM?si=BwUzcts2-_YTsb32
Final Thoughts:
If Home and Community Based Services (HCBS) was dismantled with no institutional bias my Consumer Directed Medicaid in-home Personal Care Attendant would earn a living wage and my husband would return to work. The law says nursing homes are mandatory, where in-home care services are optional and left up to States to decide on. This results in an ableist system which generates revenue for the non-disabled while simultaneously forcing people with disabilities to our deaths when a congregate care setting becomes our only choice.
Disability Media Wire / Disabilities United Association published my letter.
My Video:
https://youtu.be/_UAfZgtRKEM?si=BwUzcts2-_YTsb32
Final Thoughts:
If Home and Community Based Services (HCBS) was dismantled with no institutional bias my Consumer Directed Medicaid in-home Personal Care Attendant would earn a living wage and my husband would return to work. The law says nursing homes are mandatory, where in-home care services are optional and left up to States to decide on. This results in an ableist system which generates revenue for the non-disabled while simultaneously forcing people with disabilities to our deaths when a congregate care setting becomes our only choice.
1923 (TV Series)
Episode: The Rule of Five Hundred (2023)
Harrison Ford as Jacob Dutton
Jacob Dutton: There's this theory that these scientists came up with after studying tribes in India and Africa and South America. The smaller tribes didn't have any government, didn't need any. They could sit down and talk out their problems. Decide where to plant crops, to hunt. It was just a big family, really. But when the number of people got up around 500, because there wasn't any government, the strongest people would take advantage of the weakest. Every time, without fail, they would enslave, rape, steal. Enrich their lives at the expense of other people's lives. Government's man's way of trying to control our behavior, but it can't be controlled. It's what we are. Sooner or later, the kind of people that would enrich themselves at your expense will use the government to do it. And mark my words, one day they'll create laws to control what we say and how we think. They'll outlaw our right to disagree. If we let 'em.
Further research because I couldn’t find that scientific study, "We are built to cooperate but we can also use that cooperation against others. Intensification (is when higher population density drives your need to manipulate your situation). To scale up a society you’re trading off your freedom for the efficiency of operating the society. It’s not necessarily better for the people involved but it’s what allows the society to function. Scaling up opens the door for hierarchy (government, caste, etc.)." Vivek V. Venkataraman said on podcast "What Can Hunter-Gatherers Tell Us About Our Origins? Going Beyond the Bestsellers ~ Vivek V. Venkataraman"
Alternative Link:
https://docs.google.com/document/d/1ZiGpDMH0MUseVmQ1PR2JFYauVFXSaVjyQhUduhQquhY/edit?usp=sharing
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