Civics League Secures A+D Ointment, Catheters for Members

Members of the Civics League for Disability Rights (CLDR) recently achieved several important victories for CLDR and Independence Care System (ICS) members, including ensuring accessibility to A+D Ointment as a moisture barrier cream and securing additional catheters for members to prevent urinary tract infections (UTIs).
Sharifa Abu-Hamda Disability Advocate
CLDR Co-Chair Sharifa Abu-Hamda

CLDR Co-Chairs Sharifa Abu-Hamda and Marcus Johnson and ICS Senior Vice President, Rehab and Mobility Services Jean Minkel collectively worked together to secure the vital equipment and supplies for people with disabilities.

A+D Ointment is a preventative treatment that has aided members with a moisture barrier that, without it, can lead to a host of skin complications and pressure injuries. As of October 15, A+D Ointment has now been added to the Medicaid Over-the-Counter (OTC) formulary file. Previously, members had been told they could go to the pharmacy and get a moisture barrier using their over-the-counter benefit. However, when members went to acquire the ointment, they were told it was not a covered item.

After conversations with officials from New York State Department of Health (DOH), Sharifa, Marcus and Jean learned of the important update that lets members add the much-needed ointment back into their preventative health regimen. Members must obtain a prescription/fiscal order for A+D Ointment, written by their practitioner, which they can bring to their pharmacy, along with their Over-the-Counter card (or Medicaid Benefit card).

“A+D Ointment is crucial to our health—it’s important for preventing wounds,” said Sharifa. “Most members have it. It should have been covered from the beginning.”

Members to receive extra catheters

Another small victory was securing an increase in the number of ‘no-touch / closed’ catheter kits in order for members to comfortably and safely urinate without running the risk of contracting UTIs. 

After a number of conversations with the DOH, members will now be able to receive 90 catheters each month, compared to the previous allowable of only 60 catheters a month, for members using this type of catheter, to prevent re-occurring UTIs.

“We’re still advocating for more. Normally, one goes to the bathroom four or six times,” said Marcus. “All it takes is one bad incident, and a member can develop an infection. We need DOH to continue hearing from people with disabilities so that they better understand our experiences, and the day-to-day realities and challenges we face.”

Jean echoed those sentiments, especially to ensure for members’ overall health. “The Durable Medical Equipment (DME) group  at DOH said they’d look at the utilization of it,” she said of the catheters. “I will say, 90 is better than 60, but it doesn’t eliminate the problem. These are crucial changes which help protect a person’s health and it’s important for members to have what they need to prevent wounds whenever possible.”

Backup wheelchairs for members

A highly important concern among members has been equipment repairs for their backup wheelchairs. When members face issues with their primary chairs, they rely on backup chairs more often than they would prefer. Many members have expressed concern that repairs of backup chairs would not be authorized following the end of continuity of care.

Jean said that after conversations with Visiting Nurse Service of New York (VNSNY), the organization has committed to fixing backup wheelchairs for members. She said that, ultimately, the goal is to have repairs of backup chairs included as part of the Medicaid policy so all people with disabilities can maintain independence in mobility, even when their primary chair is not working. That, however, is an ongoing conversation with the DOH.

“The DME group turned down our policy proposal,” Jean said. “They approach the policy need as providing ‘the least costly alternative to meet the medical necessity.’ The ICS approach is to provide the support the member needs to keep someone independent and mobile to go to work, be a parent and do all they want to do. DOH noted that they will take a look at this policy again.”

Moving forward

As 2021 begins to wind down, Sharifa, Marcus and Jean remain optimistic that, leading into the new year, continued conversations with both VNSNY and the DOH will provide important perspective and insight into the lives, and struggles, of people with disabilities, and that more changes can be implemented to support their needs.

The group highlighted the recent victories, as well as a major victory at the beginning of the year, when the DOH codified that insurance New York State Medicaid Managed Care  plans must pay for wheelchairs needed for use in the home and/or the community.

“We remain grateful for all of this,” Marcus said. “These updates and the progress, they give you the feeling that there is light at the end of tunnel for us. But they need to continue hearing from us, and better understanding people with disabilities and those with the lived experiences.”

There is power in our voices

Over the past several years, Sharifa said, what has been consistently seen is that DOH is willing to listen when they believe there is a strong contingent of people involved and willing to act. Both Sharifa and Marcus also said that moving forward, members of the Civics League are crucial to progress. The only way to effect change, they said, is through consistent action, whether through letter-writing campaigns, sharing their personal stories, attending Civics League meetings to learn about the tools available to advocate, or emailing complaints to DOH and filing grievances with VNSNY.

The New York State government is heading into budget season, where it decides how to spend tax dollars. Do you think NYS needs to make more money available to meet the needs of people with disabilities in the community? Making your voice heard is easy. The Civics League meets every month. They have effectively fought for change and won. We need more voices and more people telling their stories. It works! The next meeting is Monday, November 29.

Members can email complaints to the DOH Bureau of Long Term Managed Care at member’s email should explain the problem and detail how it affects their health.

To file a grievance with VNSNY, call VNSNY Member Services at 1-888-867-6555 (TTY: 711) or submit written complaints by mail to VNSNY CHOICE, MLTC Grievance and Appeals, P.O. Box 445, Elmsford, NY 10523.

Members who want to share their personal stories can submit information here

Christopher Engelhardt

Christopher Engelhardt

Communications Specialist