Categorized | Pushback

Where In The World Is Daniel Schwartz?

Daniel

Daniel Schwartz has multiple sclerosis as a primary diagnosis. He has the partial use of one arm, which allows him to feed himself, dial a phone, and tap out messages on a laptop.

By Al Norman

No one is looking for Daniel Schwartz.

The 71 year old disappeared from his home in Rockport, MA in May of 2017, and was relocated somewhere in  the Massachusetts elder services bureaucracy.

His odyssey began when he was “Section 12’d” (forcibly removed) from his home by a home care agency, and placed in a hospital, which then transferred him to a nursing facility, which forcibly passed him on to another hospital in June of 2018, where he has remained for the past year — despite the fact that he was determined “medically stable for discharge,” and no longer needs the costly level of care found in an acute care hospital. It would have been cheaper for MassHealth to just send him home, but they refused to do so.

Daniel (he asked that his real name not be used) was never given any paperwork trail to justify these coerced transfers, and none of the public or private agencies which are supposed to protect consumers from being treated like institutional luggage, offered any help when contacted.

Daniel Schwartz has multiple sclerosis as a primary diagnosis. He has the partial use of one arm, which allows him to feed himself, dial a phone, and tap out messages on a laptop. But these forms of communication are of little use to him, because the internationally-known hospital where he has been “living” for the past year routinely unplugs his laptop and puts his cell phone charger in a drawer where he can’t reach it.

The hospital considers Daniel to be a “difficult and uncooperative” patient. A psychiatric nurse practitioner wrote in his record that Daniel was “irate,” had “flight of ideas,” and was “accusatory.”

socialDaniel says the anger and frustration he feels at the institutions that took him from his home were the result of coercive, abusive and illegal actions over many months that stripped away his civil rights, and left him unable to return home with the medical equipment and services he requires: a specialized power wheelchair, a coil spring mattress, a one-person lift device, and personal care attendant services.

In response to this refusal to place him back in his home after two years of Kafkaesque care, Daniel says his frustration and mistrust of the system was totally justified.

The hospital where Daniel now resides relied on home care evaluations conducted by other agencies — like the home care agency that forced him into a hospital in the first place. The hospital refused the Medicare process for evaluating Daniel’s wheelchair needs, and suggested he return to the nursing facility — the same one that petitioned the state to transfer him to the hospital.

From his nursing home bed, Daniel applied for a MassHealth community waiver designed for people who have been in a nursing facility for at least 90 days, but want to go home. He met all the clinical and age requirements — but he applied twice, and was denied twice, on the grounds that “he could not be served safely in the community.”

The hospital refused the Medicare process for evaluating Daniel’s wheelchair needs, and suggested he return to the nursing facility.

On appeal, the MassHealth hearing officer claimed that “no home care services are willing to engage with him.” Yet Daniel had a support letter from an Independent Living Center willing to provide for his care. MassHealth said Daniel’s needs were “beyond home care services’ ability to safely provide care services.” The word “safely” was never defined, but as a result, Daniel was denied his right to live independently at home —even if he ultimately failed.

After his appeal was rejected, Daniel decided not to appeal further to court, and months later he is still fighting a daily war over “a thousand indignities” in his care: how he is positioned in bed; the damage being done to his skin and his spine; the lack of access to his phone and laptop. This is not even close to the “patient-centered” care that the state says it honors.

Two home care agencies were unable or unwilling to bring him home. Two hospitals have been unable or unwilling to give him a discharge service plan, and two rehabilitation facilities have been unable or unwilling to rehab him.

Despite the fact that there are individuals more disabled than Daniel receiving care every day in the Commonwealth, and despite the fact that MassHealth law says that consumers have a right to receive care “in the least restrictive care setting appropriate to their needs,” Daniel Schwartz remains missing from the community.

The media has shown no interest in his case. The state’s Department of Public Health, which oversees quality of care in nursing facilities and hospitals, has provided no relief. The cracks in our elder care system have opened up and swallowed Daniel whole.

A year ago, the hospital gave Daniel a letter which concluded: “You will be discharged to [name of rehab], where you have resided for the past year. A bed has been held for your return…”

Yet one year later, Daniel is still in limbo — not  a patient, but not discharged. He is literally nowhere, and moved frequently from room to room. Not able to order the food he wants off the hospital menu like patients do, or to have regular access to his phone. He refuses to go back to a nursing facility, hoping daily that some lawyer will come to his rescue.

Daniel is the symbol of everything broken in the Massachusetts elderly home care system. He will remain so, as long as everyone keeps looking the other way.

Al Norman worked in elder home care services in Massachusetts for 38 years. He was the Executive Director of a statewide network of advocacy agencies. He can be reached at alnormaneldercare@gmail.com

 

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