The NYS Dept. of Health lists 56 licensed home care agencies that serve Onondaga County; the Onondaga County government only contracts with five of them.
Everyone says that right now the list of patients on Medicaid who are awaiting home health aides is longer than it ever has been. “Everyone” includes Mary Douglas, nurse/case worker; Marge Owens, nurse/supervisor; Joanne Spoto and/or Decker, director of something not clearly defined.
Around December 2013 the county executive, with the approval of the county legislature, re-ordered county government departments, including the Dept. of Social Services, the Office of Aging and Youth, and the Dept. of Health. Now nobody knows who does what—and the Post-Standard has not reported the reorganization nor has Onondaga County sufficiently updated its on-line information. There are 77,000 Onondaga County residents who receive services and they don’t know where to turn.
Some of what I have figured out is that there used to be a Dept. of Social Services, with David Sutkowy as commissioner, a Dept. of Health and an Office of Aging and Youth. There now is a Dept. of Social Services-Economic Security with Sarah Merrick as commissioner. David Sutkowy now is the commissioner of the Dept. of Children and Family Services. Robert Long, formerly director of Mental Health Services, now is commissioner of Adult and Long Term Care Services, which includes Aging, Long Term Care, Veterans, Adult Protective and Mental Health Services.
So I called all the way up the line—Douglas to Owens to Spoto-Decker—and repeatedly got told that the waiting list for aides is longer than it ever has been, so I called Commissioner Long and asked him what he was going to do about it. “I don’t know,” he said, “I really don’t.”
I described to him my circumstances: I am 67 years old, a resident of Onondaga County since 1966, on Medicaid since 1991 and receiving home health aides since around 1998. I have 14 chronic illnesses, including myalgic encephalomyelitis, diabetes mellitus, nephrogenic diabetes insipidus, chronic kidney disease, severe obstructive sleep apnea and pulmonary fibrosis. I have an indwelling catheter, power wheelchair, breathing machine and hospital bed.
In 2013 I spent eight months going back and forth between a hospital and a nursing home. Re-established in my own home in January 2014, Mary Douglas assessed me as needing 14 hours per week of home health aide service. Marge Owens signed off on the Care Plan and it was put on the “call-out list,” which means it was electronically circulated to the agencies that have contracts with Onondaga County to provide aides under Medicaid. And then I waited.
Being poor and dependent on the government for necessary assistance teaches you a lot about patience. Finally I started making phone calls. Douglas told me that the agencies said they didn’t have any aides they could send for my case. “Why not?” I asked. “I’ve been waiting months. Surely they have serviced other cases; why not mine?”
“I don’t know,” Douglas replied.
“Well, how about asking them?” I said. Douglas seemed surprised by the concept. Thereafter, she didn’t follow up.
I called Douglas’ boss, Marge Owens, and went through the same series of questions. She also didn’t know and didn’t find out for me, so I called Owens’ boss, Spoto-Decker, and she said she would find out. She never called me back and when I called her back then she wouldn’t give me a straight answer and kept changing the subject.
So I called the County Executive’s Office and somebody named Pam said she would find out why I couldn’t get aides and call me back. She didn’t. When I called her back then Pam said, “You have exhausted all the agencies . . . you’re kind of uncooperative.”
Well, in the first place, blaming the patient is definitely not the way to go, particularly when I’m the patient.
In the second place, am I being discriminated against because I am an effective activist? When I was in the hospital for 104 days because they couldn’t find a nursing home where I could be placed, the care coordinator asked the representative of Van Duyn Home and Hospital, which is the county-owned skilled nursing facility, if they would take me. The Van Duyn representative said, “The woman who writes a blog and files complaints with DOH [the NYS Dept. of Health]? No way!”
Babe, it’s called Freedom of Speech and exercising my rights as a citizen. Only in Onondaga County does that get you denied appropriate services.