A Member Advocate Explains: Why Self-Advocacy?

 ICS Member Advocate Marcus Johnson on self-advocacy & grievance statistics.


ICS members tend to be very satisfied customers. According to a recent member survey, 85 percent rate their care “good” to “excellent.” And more than two-thirds are “very much” or “quite a bit” content with their quality of life—an astonishing figure considering that our members tend to have complex medical needs that pose extraordinary challenges to their independence.

At the same time, ICS has always been interested in knowing where members’ dissatisfactions lie. We know we’re not perfect, and it’s important to us to know when things aren’t working for members so we can figure out how to fix them. We have a formal grievance and appeals process that allows us to pinpoint problems and try to correct them, but it doesn’t work as it’s intended to if our members don’t advocate for themselves.

Two Rules for Self-Advocacy

At Member/Participant Advisory Council meetings, ICS Member Advocate Marcus Johnson will sometimes go over the grievance statistics from the previous months, noting the number of times ICS members in general had complaints about services. They’re often in the dozens at most.

Marcus can’t help but point out to anyone listening that the numbers are likely not accurate indicators of the problems, especially on questions of transportation and personal assistance. Considering the thousands of rides members book and the thousands of personal assistance hours they require each month—not to mention the frequency with which he hears about these issues off the record—Marcus is confident that members’ complaints are underreported.

“Considering that we are getting the same number of grievances now at six thousand members that we had when we had five hundred members,” Marcus notes incredulously, “something isn’t adding up!”

Marcus believes that many members are enduring some bad service and not letting ICS know about it. This is a problem not just for them but for the organization as a whole.

“There are two things I tell members they need to do to be better advocates for themselves,” Marcus says. “First, don’t settle. With your transportation and personal care aides, you don’t need to just sit and take things as they come. It’s your home: you need to be in control of who comes into it and what they do there. And second, you need to open your mouth. If you don’t like the way something is being done, tell us! We can’t help you if we don’t know you need help.”

What that means, Marcus says, is, at the least, members need to talk to their care managers, who will file grievances for them.

A Member’s Perspective

In fact, any ICS staff member can help a member with a grievance. Marcus is a good person to go to. His title tells you why. Marcus is not just a member advocate, a position he’s held since 2005, he is also an ICS member and has been one since 2000.

Originally from Jersey City, Marcus had finished his second year on full scholarship as a dance student at Julliard and had just turned 20 in the late spring of 1991 when he was seriously injured in a car crash. A high school friend was at the wheel. “The last thing I remember, I was yelling at him that he was driving like a fool,” Marcus recalls. “When I came to, I couldn’t move.” He had sustained an injury at C-5, 6 of his spinal cord.

At 44, Marcus still has a lithe dancer’s body, only now he moves gracefully through space with the aid of a sip-and-puff-controlled power chair.

Marcus attributes his career choice in large measure to a rehab counselor at the Harlem Independent Living Center. “She made my first focus getting back into school,” he said. “She advocated so well for me. I wanted to do that for other people.”

No sooner had Marcus completed his bachelor’s in Dance Education and Performing Arts Administration at NYU in 2000 than he started work on a master’s in Rehab Counseling there. With that in hand, even as he was starting his career at ICS in 2002, he launched into the MSW program at Fordham University, being awarded his second master’s degree in 2007.  “I’ve found what I learned in school very useful for what I do,” he says.

On the other hand, Marcus relates to his work on a personal level in a way no textbook could teach. He cares deeply about what happens to members. “We learn in social work school how the work affects you, and they have all these terms like ‘transference’ and ‘countertransference.’ But when you’re going through something with a member you don’t use the terminology, you just know you’re going through it with them.”

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