Advocate Group Spurs Changes to Accessing Benefits
HOW A GROUP OF ADVOCATES ORGANIZED AROUND A PRINTED FORM THAT DIDN’T WORK, TO CHANGE THE WAY DISABLED PEOPLE IN COLORADO ACCESS SERVICES
© by Theresa Schiavone, 2019
…the form meant to qualify disabled people for a state poverty subsidy, didn’t work.
We called ourselves “the Med9” group; we were a group of advocates, both volunteers and employees of city and state organizations, who found ourselves sharing the same story: the form meant to qualify disabled people for a state poverty subsidy, didn’t work. Some of the people who needed the financial assistance provided by Colorado’s “Aid to the Needy and Disabled” program (AND) weren’t getting it. The monthly benefit for AND is just $217 per month, but it can mean food, transportation, or medicine for a person trying to secure Social Security benefits that amounts to at least $771 per month.
It turned out that other doctor’s were also reluctant to sign on to the language on the Med9 form.
I accompanied a young man with a long history of mental illness to a human services office with his Med9 form filled out by a physician’s assistant from a public mental health center. The physician’s assistant indicated that he was “temporarily disabled,” even though his schizoaffective disorder was not likely to go away. When I asked her why, she said, the alternative was to indicate that the young man was “totally and permanently disabled,” something that contradicted her public mental health center’s philosophy of recovery. It turned out that other doctor’s were also reluctant to sign on to the language on the Med9 form. The phrase “totally and permanently disabled” came from the Social Security Administration and was intended to indicate that a person was not capable of maintaining gainful employment. This certainly seemed true for my young friend, but he was not categorized by his provider as a person who could not support himself because the language on the Med9 form was extreme enough for a physician’s assistant to be reluctant to indicate a “permanent” disability. And that was only the beginning.
I suggested that the disabled man’s chief impediment to communication was not that he couldn’t speak English, but rather that he heard voices.
At a human services office, because the young man was classified as “temporarily disabled,” he was subjected to a series of questions on the back of the Med9 form which were intended to determine whether other, “social” factors affected his ability to work. The questions were read by an employee who graded the young man’s responses. He asked if the man spoke English and whether he was able to understand him. I suggested that the disabled man’s chief impediment to communication was not that he couldn’t speak English, but rather that he heard voices. I thought to myself, presumably they speak English too.
…anyone who spoke English, was young, and graduated from high school couldn’t score enough points to be eligible for the benefit.
My young friend was not found to be eligible for Colorado’s Aid to the Needy and Disabled benefit because his score on the questions on the back of the Med9 form wasn’t high enough. On closer examination, anyone who spoke English, was young, and graduated from high school couldn’t score enough points to be eligible for the benefit. Of course, mental illness often affects young people who speak English, and have graduated from high school.
I called an attorney who had helped me with a Medicaid problem. Sure enough, she told me that I wasn’t the only person having trouble helping someone get Colorado’s Aid to the Needy and Disabled benefit. She introduced me to her colleague at the Colorado Center on Law and Policy, Allison Neswood, who was assembling a group of advocates who had been struggling to get this basic benefit for their impoverished, disabled clients.
Including stakeholders; like the Colorado Coalition for the Homeless, the Colorado Cross-Disability Coalition, Easter Seals, Bayaud Enterprises, Colorado Legal Services, and NAMI; was enormously meaningful for Allison. Looking back, she says, “We really did transform this whole program. It was such a personally beneficial experience to work with people who experienced this system, either through their clients, or through their family members… and to be able to think about where are my own blind spots… because I don’t maybe have to deal with a particular problem [personally]. But when we work together as a community, we can really make sure that our systems work for the people that need them.”
Neswood listened to the concerns of each member of the Med9 group and wrote about them to the Colorado Department of Human Services (CDHS). After about a year of correspondence, …they created a department work group…
Neswood listened to the concerns of each member of the Med9 group and wrote about them to the Colorado Department of Human Services (CDHS). After about a year of correspondence, she notes, “…they created a department work group that had department staff, county workers, and that had advocates, too, around the table, thinking about what were the changes they could make.” There were three approaches to change, she recalls. One was what we could do right away. One was what the department could do through regulations. And, finally, we looked at what might be remedied through statute.
We started with a cover letter explaining that “totally and permanently disabled” wasn’t a medical prognosis. Over time, instead of requiring that a physician make a determination about long-term disability, the form asked the physician to describe the patient’s disability. And, we expanded the categories of those who cold sign the Med9 form to psychologists and licensed clinical social workers; these professionals were much more likely to see clients applying for AND benefits than physicians.
“…once we had them on our side, we could get into a much more robust conversation about what substantively we could do to change this form and make it more useful for everybody.”
Fortunate clients were also served by navigators, professionals trained to help people complete benefit forms successfully. One of them, Janet Rose who worked for Bayaud Enterprises, was a member of our group. She says the changes made to the AND application reduced the aversion that many doctors and healthcare companies had about filling out the form. Rose was also integral in convincing CDHS administrators that time lines for completion of the AND application and Social Security applications that have to be filed at the same time should be lengthened. She was averaging 45 days to finish these roughly 40 page applications and knew that quality applications were more successful and took time. One of the requirements for obtaining AND benefits is applying for either of two Social Security benefits: either Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). At a certain point, Rose says, a lot of decision makers were working together to make the application process for AND and simultaneous SSI or SSDI applications more efficient. “I had a very fun moment,” says Rose,” in one of the big meetings we had with the state and our big advocacy group in a… filled room. [I] was happy to talk to Social Security and DDS [Disability Determination Services, the group that makes decisions about Social Security applications], and have them say, ‘Yeah, that’s right.’ …once we had them on our side, we could get into a much more robust conversation about what substantively we could do to change this form and make it more useful for everybody.”
Now there is a presumptive eligibility for applicants to receive AND benefits.
Now there is a presumptive eligibility for applicants to receive AND benefits. There are no more questions asked of clients by employees at human services offices to determine the severity of a disability. Applicants have 60 days to complete a Social Security application after submitting their Med9 form. The form focuses on the nature of a person’s disability which can be determined by a physician, a psychologist or a licensed clinical social worker.
The Med9 group more recently has focused attention on the need for navigators to help disabled people apply for Social Security benefits. Once SSI or SSDI benefits are approved, the state is reimbursed for AND benefits paid to disabled residents by the federal government.
If you or someone you know is disabled and have difficulty sustaining employment to meet your basic needs, you can apply for Colorado’s Aid to the Needy and Disabled Program at your county human services office. You will also be asked to apply for the federal Social Security benefits SSI or SSDI. You can also seek a navigator to help you with this process. (And it’s highly advisable!) Navigators are available through the Colorado Coalition for the Homeless, Easter Seals and Bayaud Enterprises.
This material may not be published, broadcast, rewritten, or redistributed. (c) 2019 by Theresa Schiavone. All rights reserved