Edith Cresmer Delivers Testimony to NYS Assembly Members
Poignant, personal testimony delivered by our esteemed board member Edith Cresmer that is “inspiring and motivating” NYS elected representatives, according to Assembly Member Ron Kim.
You can read her full testimony below.
Thank you for inviting us to give testimony regarding Home Health Care. As public officials, you probably know that Medicare does not cover supportive services for home bound persons, without which they cannot recover or could die. So how do people manage when such services are needed?
My name is Edith Cresmer and I’m the caretaker for my 93-year-old partner who has Alzheimer's disease. Unlike many facing such a problem, I have been lucky to get help from Gray Panthers, from Caring Kind, from New York State’s Medicaid Managed Long Term Care program, from the New York Legal Assistance Group and from Visiting Nurse Service. Most important, Kal and I have been fortunate to get to know and be helped by several wonderful home health aides. They deserve more help and higher salaries.
Gray Panthers held a public meeting in April 2016 at the Bronx County Courthouse about Improving the lives of care recipients and their helpers. Speakers described the process involved when a family has one member requiring additional help and how many find it difficult to handle the numerous issues involved.
I had a sudden awareness that day that I was a caretaker. Kal had been seeing doctors for panic attacks and depression and I struggled with concerns about his mobility and occasional confusion, but now I began to understand what was needed. Kal also suffers from peripheral artery disease that interfered with his mobility, resulting, about two years ago, in his becoming bedbound.
One of the speakers at Gray Panthers’ Bronx meeting represented Caring Kind, so I visited their office and was given information.
In October 2016 joined a Caring Kind Support Group for spouses and partners of people with dementia and I am still in that group. In addition to the support group, Caring Kind provided information sessions that resulted in Kal getting Medicaid after he had spent down an Annuity. A volunteer lawyer with The New York Legal Assistance Group helped me by reviewing Kal’s Medicaid application; he made a suggestion that was incorporated in the next year’s Application form.
At first, before the Medicaid, we used Home Health Aides from a local agency [Select Care]; after Kal’s Annuity was used up, I helped him get Managed Long Term Care [MLTC] Medicaid. This form of Medicaid takes income from the patient that is over the Medicaid limit and puts into a Pooled Income Trust. The Pooled Income Trust can pay approved bills, such as rent, with some of the money; annual and monthly fees are subtracted.
My main concern that I want to bring to your attention is the low salary that the aides make - $17 an hour.
The difficulties I encountered were varied and very hard for me in spite of having worked for the NYC Health and Hospitals Corp. and the Department of Health and Mental Hygiene.
Some people I know have engaged Geriatric Care Managers which can cost around $40,000 to help them get Medicaid and other issues. Fortunately, Susan Barrie, a wonderful lawyer friend came over and helped him execute a Living Will and Power of Attorney to me, which I have had to fax to many different entities. Since we began the process to enroll in MLTC Medicaid in late 2020, everything was remote due to COVID.
I had to gather material from Kal’s files, communicate with his daughters and his doctors and his broker. I worried about him all along fearing he would harm himself and sure enough he fell or walked into a door one night gashing his head. EMS was called and we were in and out of Bellevue in about four hours. I had to bring him to doctors, to the emergency room several times, to get Assess-A-Ride. In a way, I took this for granted because I love him and was always the one in charge of the household finances. But his personal financial life was separate until the Dementia set in.
His peripheral artery disease required several operations and after the third most serious one, we had some home health services after the four week rehab; a physical therapist referred us to a private home health aide that we paid out of pocket -- an amount $2 less than Select Care but undoubtedly resulting in a higher wage [$25/hour] for her. She cared for Kal for almost two years during a time when he was still ambulatory and I was sorry she could not continue once he needed to get Medicaid because his money ran out.
Due to immigration problems we couldn’t use that Home Health Aide but someone in our apartment building died just then so the aide who cared for him came to care for Kal. The Medicaid MLTC encourages the use of Consumer Directed Personal Assistance Services [CDPAS]. That program allows the use of relatives and friends who are employed and paid by a company that in turn bills the MLTC agency [Visiting Nurse Service in Kal’s case]. His needs became more challenging once he was bed bound. Now we have a hospital bed, not to mention a lot of incontinence supplies. Scheduling several aides to cover seven days a week is complex.
And I’ve had my own health problems, off and on. But I’m doing pretty go for my age. I like to say that I am 21 [times 4]. Then I realized that Kal is 31 [times 3]. So there we are, trudging on.
Kal entered Hospice 10 months ago and recently has taken a turn for the worse and may be coming to the end of a pretty good life, he has a Ph.D. from NYU, was a psychotherapist, helping many people, and a computer programmer, an artist and good friend to many people, and my best friend and love.
My final appeal to the Assembly members is to ask them to recognize the urgent need to improve the compensation and benefits of those wonderful Home Health Aides and pass needed legislation to achieve that goal.
Edith A. Cresmer
New York Gray Panthers