Tell the Governor: Stop Advertising Disabled People on an Online Marketplace

By Lindsey Sodano, Editor, End Ohio’s Parent Penalty*

Under the DeWine administration, the Ohio Dept. of Developmental Disabilities used taxpayer dollars to fund a $985,000 grant to a company called OnSeen Marketing, Inc. OnSeen then created an online marketplace where county government employees advertise people with developmental disabilities, with or without the disabled person’s consent, to hundreds of third parties. End Ohio’s Parent Penalty investigated how county boards use this marketplace, and what we found raises disturbing questions about privacy, consent, and basic human dignity for Ohio’s most vulnerable citizens.

You can sign the petition telling the governor to stop this by clicking here.

An Online Marketplace of Disabled People

The online platform OnSeen Marketing created for DODD is called the LiveCare Marketplace.

Here's how it works:

A county board employee creates an online advertisement of a disabled person. The advertisement can include the person's name, age, city, zip code, gender, diagnosis, medical conditions, behavioral concerns, supervision needs, communication abilities, weekly schedule, places the person frequently visits, and other private details.

The LiveCare Marketplace then generates a list of all the home care providers who claim they provide services in that disabled person’s county and are accepting new clients. LiveCare says it uses artificial intelligence to make suitable matches. When asked whether OnSeen uses the disabled people’s data to train AI models, OnSeen did not answer the question.

Once the county board employee receives the list of matched providers, they can choose which providers they want to receive the advertisement of the disabled person. In my daughter’s case, LiveCare matched a nonconsensual advertisement of my child to 392 third parties all across Ohio. We contacted OnSeen to find out why this happened. They answered, “Any specific requests for information regarding an individual referral should be directed to the county board of DD who originated the referral.”

The Name Game

Colleen Foxton, LiveCare Administrator for the Clermont County Board of Developmental Disabilities, told us, “LiveCare only has basic information about individuals. No identifying information (at least it shouldn’t).” Unfortunately, that’s not true.

One provider logged in to LiveCare and immediately found 19 advertisements containing disabled people’s names. The names were not shown in the “Name” field. County board employees had entered the names into other sections such as “Medical or Behavioral Concerns” and “Expected Outcome.”

One advertisement out of Portage County repeated a disabled man’s name six times throughout the advertisement.

Another ad out of Butler County listed a young man’s name, mental health issues, and his current exact location at a nearby residential treatment facility. It is unknown whether these individuals consented to or even knew about these disclosures.

When asked to comment on name disclosures, OnSeen stated that “individual names are never shared with potential providers in the system.” OnSeen also stated that county boards use their own internal processes and procedures to manage referrals. OnSeen did not explain why LiveCare permits names to be displayed to potential providers, nor did it answer our question about how a disabled person could ask to have their name or records removed from LiveCare if they do not want to be advertised there.

End Ohio’s Parent Penalty is investigating how widespread the inclusion of names in LiveCare advertisements is across Ohio. The findings so far raise serious questions about whether county board employees are adequately trained and supervised to protect the private health information, records, locations, and identities of people with developmental disabilities.

Location, Location, Location

You might assume that LiveCare only sends advertisements to providers who actually serve the county where the disabled person lives. Unfortunately, that is not the case.

Any provider can go to their LiveCare dashboard and change their service area to “All Counties,” even if they have already told DODD they only serve certain counties. Selecting “All Counties” then allows the providers to receive disabled people’s advertisements from all over Ohio, even if the disabled person being advertised lives three hours away.

We found that in my child’s case, the service coordinator posted an advertisement without consent, and it went to providers located more than 200 miles away.

One provider who lives three hours away responded, saying, “I'm not interested at this time due to the distance. I'm located in Lucas [C]ounty.”

The Popularity Contest

When a county board sends an advertisement to a home care provider, the provider receives an email that says, “Congratulations! You have received new referrals in the LiveCare Marketplace from the _______ County Board.”

The home care provider then logs in to a dashboard to view the disabled person’s advertisement. For each advertisement of a disabled person, LiveCare allows providers to click on a green “Interested” or a red “Not Interested” button, similar to the concept of swiping right or left on a dating app. Each provider can see how many other providers clicked that they are “Interested” in each disabled person.

Some disabled people appear to be considered undesirable, with only 1–4 providers clicking “Interested.” Others appear to be in high demand, with over 100 providers clicking the “Interested” button. It is unclear what person-centered service planning purpose is served by allowing providers to compare how desirable or undesirable various disabled people appear to be.

When asked about this “Interested” comparison feature, OnSeen did not answer the question.

Who Gave the Government Permission to Do This?

Federal law and Ohio law both provide strong privacy protections for the confidentiality and dignity of people with disabilities, as well as the privacy of their protected health information, county board records, and identities.

It is illegal in Ohio for any person to disclose the identity or release the records of a person receiving services from a county board of developmental disabilities, unless a specific exception in the law applies. This law applies both to identity (such as name) and records (such as diagnosis, location, etc.) Violating the county board confidentiality law is a first-degree misdemeanor in Ohio. Even the Ohio Association of County Boards understands the seriousness. They issued a comprehensive privacy training manual to help county boards comply with Ohio’s strict privacy laws.

Separately, Ohioans with developmental disabilities have their own Bill of Rights. These include the right to privacy, the right to be treated with dignity and respect, the right to participate in decisions affecting their lives, and the right to confidential treatment of information in their personal and medical records. These are not recommendations or optional “guidance.” They are rights provided by Ohio law.

Depending on the information disclosed and other factors, the marketplace raises HIPAA concerns as well. County boards sign agreements with DODD stating that they are required to follow HIPAA privacy rules.

Finally, OnSeen’s End User License Agreement specifically prohibits using LiveCare in a manner that could reasonably be expected to “violate the rights of another user or data subject.” In other words, the company's own rules recognize that people with developmental disabilities (referred to here as “data subjects”) whose personal information is entered into LiveCare have rights that must be respected.

Who Receives These Advertisements?

We might assume that when a government agency distributes a disabled person’s confidential information, it goes only to carefully vetted professionals. But in some cases, county board employees themselves are warning families about Ohio’s provider pool.

Here is what happened when the Warren County Board of Developmental Disabilities posted my minor child on the LiveCare Marketplace over my repeated objections:

My daughter’s service coordinator warned us about the provider pool, saying, “There’s gonna be some weird ones.” She named a provider she said has “a sketchy past.” She told me that the Warren County Board of DD has experienced situations where provider agencies are hiring direct care workers who “don’t have a house,” “just have nowhere to go,” and were found sleeping on couches at the homes of the individuals.

I tried very hard to prevent Warren County from advertising my child online. I refused verbally, sent multiple emails objecting, hired civil rights lawyers who also sent notices objecting, and even filed a federal lawsuit. Nothing worked. After we filed the lawsuit, the Warren County Board of Developmental Disabilities advertised my daughter on LiveCare anyway. The records show LiveCare “matched” my child with hundreds of companies all over the state, even people who live three hours away and said they don’t serve our area.

I didn’t find out about LiveCare until five months after this happened. I had never even heard of LiveCare, much less consented to posting my daughter there. When I finally found out the names of the agencies who received my daughter’s ad, I went to one of the company’s websites. It showed customer reviews, but image searches showed that the supposed satisfied customers were just stock photos such as “Handsome young man with new stylish haircut” and “Pretty Smiling Joyfully Female Fair Hair Stock Photo.” I then drove to the office building where this company said they were located. There was no company there by that name. This same company also claimed to have a partnership with DODD, but when I asked DODD Director Lyndsay Nash to confirm that partnership, she didn’t answer my question. I now have absolutely no idea who the Warren County Board of DD sent my child’s records to.

DODD Deputy Director Allan Showalter told me, “The Department does not specifically require county boards to use the OnSeen LiveCare Marketplace for use in provider searches, nor do we specifically regulate its use.”

It is unknown how many disabled Ohioans have been marketed online without their knowledge, without giving consent, or even after objecting in writing multiple times. When asked about this issue, Deputy Director Showalter stated, “I am not aware of any complaints received by the Department, other than your own, regarding a provider search that the person served or guardian did not want to occur.”

If you or your loved one have been advertised in a provider search you did not want to occur, you can report it to Deputy Director Showalter at Allan.Showalter@DODD.Ohio.gov. If you do not know whether or not your county board has uploaded you to LiveCare, you can ask your SSA. And please also consider signing the petition to stop this from happening to more Ohioans.

People With Disabilities Are Not Products to Advertise

County boards are required to assist people who ask for help finding providers. But there is something deeply troubling about a government-funded marketplace where disabled people's most personal information can be distributed statewide without their knowledge or consent, and even over the disabled person’s multiple express written objections.

It’s also wrong that providers can view the records of people who live hours away when the provider has no intent to drive that far to serve a client. And it’s wrong that providers can compare the popularity of disabled people among other providers and see which disabled people are ‘trending.’

People with developmental disabilities deserve privacy. They deserve dignity. They deserve to not be reduced to an “Interested” or “Not Interested” button. They deserve a say in who receives their personal and medical information.

What Should You Do if This Happens to You?

If you suspect your county board of DD may have advertised you or your loved one on the LiveCare Marketplace without your consent, without your knowledge, or even over your objection, contact your county board and demand copies of the advertisement, the list of providers who received the advertisement, all responses, audit logs, and all other information related to the unauthorized posting. DODD has stated that they do not have access to these records.

How Can We Stop Unauthorized Advertisements of Disabled People?

Remember that in every other health care sector, people seeking providers go online and search for available local providers. Doctors, physical therapists, dentists, and other health care professionals do not read online advertisements of potential patients and click “Interested” or “Not Interested,” then look and see which patients are more popular than others. Why are we doing this for home care?

Please sign this petition to demand that Ohio take down the LiveCare Marketplace and replace it with an online portal where providers are the ones being advertised and disabled people are the customers, not the product.

*Disclosure: The author is a plaintiff in a federal civil rights lawsuit which involves a LiveCare Marketplace posting.