Continuity of Care - Not Alone on the Road

photo: Ruben Mishchuk

Bruce Lewitt, the Director of Social Services for Proxy Parent Foundation, is my husband. This means I have a front-row seat to see exactly how he and other Personal Support Specialists serve the foundation’s beneficiaries and their families.

Recently Bruce came home after visiting Fred (not his real name), a beneficiary who was in the hospital. He told me he’d had met Fred many years ago when his mom first set up a trust at Proxy Parent Foundation. She was feeling overwhelmed. Fred had gone through a revolving door of Board and Care facilities because he was prone to wander out of each one and end up in the state hospital. The state hospital recently closed, and Fred had returned to the family home to live. His mom needed help with finding a new living situation for her son for him to hopefully become more stable. Fred became a beneficiary under Proxy Parent Foundation’s Pay-As-You-Go Program, and Bruce started to work with Fred as his Personal Support Specialist (PSS). Bruce became familiar with Fred’s and his mom’s particular needs and then paired Fred with another very qualified PSS.

For many years the PSS worked with Fred, but when his mom passed away, Fred wandered off and went missing. The Board and Care filed a missing person’s report with the police, but it was the PSS, who scoured the streets for Fred and found him. Keeping Fred stable required constant oversight by his PSS. Like so many beneficiaries, in addition his severe, chronic schizophrenia, Fred continued to experience multiple medical issues for which he is treated by the public health system. Like so many others who suffer from schizophrenia, Fred was a heavy smoker, unable to quit. He’d made it through a series of serious lung infections, a hip fracture and survived cancer. These conditions, combined with behavioral problems of his sometimes physically acting out, to the extent of even striking staff and other residents, have caused Fred’s psychiatric medications to be changed frequently. This pattern sometimes contributed to new medical issues, or unwanted new side effects. The PSS was there to care for Fred for many years until the he finally retired. Because of the value that Proxy Parent Foundation places on continuity of care, Bruce stepped back into the role of Fred’s PSS just as Fred’s health began a serious and steady decline.

There was great urgency because Fred’s cancer was spreading, and his Deputy Public Guardian had been reassigned to another department and no replacement had been named. Bruce visited Fred in the hospital frequently. He stayed in a constant dialogue with Fred’s Medical treatment team. They relied on Bruce to keep Fred’s spirits up and to gain Fred’s consent for medical procedures. Life-saving cancer surgeries were performed. Fred pulled through after a long, trying recovery. A new Deputy Public Guardian was finally assigned. Bruce pleaded with her to find a quality locked Skilled Nursing Facility that would be able to simultaneously handle Fred’s fragile medical and volatile psychiatric needs.

Then Bruce learned that each new team of successive caregivers in the public system had no sense of Fred’s history. Bruce discovered that his charts weren’t digitized or otherwise shared. The hospital where Fred had his recent cancer surgery had also closed and none of the hospital’s records were available to be distributed.

Despite the fact that Fred was conserved, Bruce thought there must be files, but if there were, it appeared they weren’t coordinated to follow Fred to facilities he may be treated in or transferred to. When a beneficiary is conserved, Proxy Parent Foundation doesn’t have access to the records. Bruce made several calls and spoke to a number of the staff but could only get anecdotal documentation.

Bruce knew he needed to request whatever records there were from the Public Guardian’s Office. He asked if the Public Guardian’s office had Fred’s mental health and medical records, and if they did, Bruce was requesting access. He learned the Public Guardian doesn’t keep medical or psychiatric records, and that there is no central repository for treatment history. All Bruce could do was now to continuously update Fred’s treatment providers and address needs he knew were important to Fred - access to an outdoor space so he could feel the warmth of the sun, and if that time out included smoking a cigarette on the hospital’s scheduled smoke breaks, so be it.

When I’m asked about Bruce’s work, I explain that what Bruce and Proxy Parent Foundation’s Proxy Parent’s Personal Support Specialists do is no different than what so many mothers and fathers, brothers and sisters, relatives and friends do in caring for their loved ones who are disabled by severe and chronic mental illness. That’s why the foundation offers this unique service.