The Vital Importance of Advocacy in Colorado

by Bryce Rafferty, CDASS Participant

While I wasn’t born in the state of Colorado nor did I grow up here, I am beyond thankful for this state, it’s people, and the public healthcare that makes life in Colorado that much better for persons with disabilities. Most people know Colorado for its mountains, but most don’t know that Colorado State Medicaid is one of the best in the union. Speaking with another quadriplegic like myself from Iowa, I heard about how Medicaid in his home state falls far short of the coverage and quality of care that I enjoy on a daily basis. However, being on federal health insurance anywhere has its fair share of challenges, and it is the responsibility of the people to hold the government accountable and maintain the positives when they are threatened by changes or pitfalls in policy.

With my disability, I am far from being an independent person. Every morning, I need assistance to get out of bed and get ready for the day. Once that help is gone, I use a wheelchair to move and set up my apartment and life generally to enable me to make it until help returns in the evening to assist me back into bed. One of the great benefits of Colorado Medicaid is a waiver called the Consumer-Directed Attendant Support Services program (CDASS). It was diligently put together by the State government as well as advocates in the form of individuals and entities like the Colorado Cross-Disability Coalition (CCDC). 

CDASS enables me to pay my aides well in addition to having the freedom to choose who they are in the first place. This program affords me much more liberty in-home healthcare than being contracted to an agency. But even here, as with agencies, there are no guarantees. There are some highly inefficient tools to network and communicate between persons with disabilities and professional aides. The end challenges with the quality and accountability of home healthcare under CDASS remain: there’s always progress to be made.

Generally, it is very challenging to have any effective communication between the disabled and the government in any capacity, in any state. Persons with disabilities are a small but growing portion of the population, frequently facing many different limitations that minimize our voices and capacity to organize. Without organizing, it’s near impossible to challenge or improve a given healthcare waiver or policy. 

I was extremely fortunate to have the opportunity to argue against a negative Medicaid policy change in a State Administrative Law Court proceeding last summer (2018). I had appealed the withdrawal of Medicaid coverage for a certain vital medication of mine. This medication was covered for me personally seven years prior to the hearing, and the State argued the medication had been previously approved because of an “administrative error.” The termination of coverage, allegedly, was the result of the State’s correction of that error. I was a country mile away from being the only one affected by this policy change in Colorado — a state with a substantial disabled population relative to other states – but I was the only person to contest the policy change. 

Fortunately, I won the appeal, but enforcement was an entirely different matter. The Court decision explicitly said the medication was covered by Medicaid. So, when my pharmacy informed me Medicaid was still not covering it, I was shocked. What’s more, when I contacted the State, I was told the decision wasn’t in my favor, that I had, in fact, lost. The State wouldn’t elaborate any further, informing me that if I disagreed with their continued denial, I could always appeal again. 

I had just started a University graduate program, so I had no time to appeal again. I was forced to fundraise for this medication until late Spring 2019 when I somehow ended up on the same email thread as the State representative I argued against in the court hearing. I pressed to clarify what on earth had actually happened. The appeal had “sparked conversation in the State Department,” and they had decided to cover the medication months prior. I hadn’t received any notice, and the only evidence of the policy change was deep within a fifty-page document that is publicly available yet hidden deep inside a government website. Despite my efforts to spread the word, I’m positive there are a significant number of persons with spinal cord injury in Colorado who still pay out of pocket. Again, there’s always progress to be made. 

But how? For one, advocacy works. In spite of the fact that the State temporarily ignored an official legal ruling, the end result speaks for itself. I was able to achieve a result individually, but this is actually an anomaly. With 99% of issues, strength comes from organized advocacy like CCDC. Without the work CCDC has already done and the information I’ve learned from going through their advocacy training program, I’d never have known it was even possible to appeal an unannounced policy change. The primary reason Colorado Medicaid is so much better than other states is because of decades of advocacy work done in the past and ongoing. CCDC, OneStrongVoice, CREEC, and other advocacy groups have achieved great things for persons with disabilities and continue to hold the State accountable as the enormous influx of people threatens to push civil rights concerns further into the periphery of the State legislature. I am beyond thankful for the work my contemporaries and colleagues have done to make the life I’m living possible.

It’s essential that the Colorado population at large recognize the place our advocacy groups and their advocates have in the preservation and advancement of civil rights/disability rights in our great state. They represent the democratic process at its best, and I look forward to continuing my relationship with them as well as seeing their work make this state as inclusive as it is beautiful.