It is time to fix Personal Care services

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.

Best regards

The opinions expressed here are solely those of the author.

Letter contributed by Ivy Kennedy