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Learn from the first-hand experiences of others.

Slide background

Learn from the first-hand experiences of others.

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Learn from the first-hand experiences of others.

Slide background

Learn from the first-hand experiences of others.


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Like many young adults, I knew that one day my health would demand that I slow down, but I always assumed that day was decades in the future. I planned to be one of those rare octogenarians swooshing down the Alpine slopes and hiking the Appalachian Trail.

During an emergency room visit after an accident, tests revealed I had advanced arthritis. After I recovered, my orthopedist recommended that I wait as long as I could manage the pain before considering joint replacement. I realized that at some point it would be necessary, but I thought I had plenty of time.

Just five years later, examinations revealed that both knees had reached the bone-on-bone stage. Someday had arrived. My mobility was rapidly declining, but based on prior experience, I assumed I would spend a few weeks healing and life would return to normal. I thought my doctors were overly negative when they suggested I apply for disability and plan my future around frequent doctor visits, managing chronic pain, and adjusting my lifestyle to accommodate a modest income.

Friends told me it could take 3 to 5 years to gain approval. Others said it is normal to be denied several times before the Social Security Administration (SSA) approves claims. Although I filed the initial paperwork, I didn’t take the prospect of permanent disability seriously. I didn’t worry about the extended approval process. I knew I would return to a full active life.

When I entered the hospital for surgery, I never dreamed that I would wake up with permanent nerve damage and spend the next nine months learning to walk normally again. I never dreamed that the SSA would approve my application within five months or that I would eventually find myself trying to navigate a government system where many workers don’t have the skills or resources to help people achieve self-sufficiency. That was my reality.

During my recovery, I supplemented my disability income with my daughter’s college fund and dabbled with online work opportunities that didn’t require rigorous physical activities. I reluctantly researched job training programs. Personal values demanded I take responsibility for my future, but my concentration was severely hampered. I learned that chronic pain affects cognition as much as physical ability.

Whether it was pride, self-preservation or naiveté, I hesitated to ask others to speak for me or interpret the vast quantities of data I gathered. If I had to go through the first five years again, I would find a personal advocate who I trusted to interpret information, and who would be honest with me about my abilities and limitations.

The good news is that there are hundreds of programs available to people who find themselves forced to prematurely exit the full-time work force. Public and private enterprises have contracts that support telecommuting across multiple industries. The SSA also has resources like PASS (Program to Achieve Self Support) and the Ticket-to-Work Program that allow people to earn more money during the transition.

On the downside, I spent a full decade trying to file an application for the PASS program. It was frustrating to get a different answer from everyone I spoke with. Sometimes, the inconsistencies discouraged me so much that I stopped trying to get help from government representatives. I struggled to find resources on my own for weeks at a time – convinced I could find solutions without dealing with employees who didn’t seem to know how to help me.

Worse than getting different answers from different workers, is reaching someone in a government call center who is only allowed to read a scripted response to your questions. If you ask a question that doesn’t fit any of the answers, you’re referred to another office. You may or may not reach a representative with relevant answers.

It was during one of these periods of self-exploration that I discovered information about the PASS program. Everything I read recommended working with a vocational counselor to increase the chances of approval. I spent four months working with a vocational rehabilitation specialist on the application.

While working with the counselor I continued to do personal research. When I found information about a program called the Individual Development Account (IDA), I asked my counselor about eligibility. She admitted she had never heard about this matching grant program that helps people pay for college, start a business, or buy a first home. I expected counselors to have more knowledge and organizational skills than I did. My frustration grew when she asked me to print all the online information I could find and bring it to her.

In the end, the specialist failed to mail my application to the cadre for my district on time – I had to start the process over from the beginning.

I eventually completed the IDA application process alone and received a $3,000 grant for education; I’ve shared program details with countless others over the ensuing years.

I am thankful that my doctors insisted I take those first steps to prepare for the future. I regret not admitting to myself earlier that age doesn’t guarantee health and wellness any more than retirement planning means you’ll settle into the rocking chair before you’re ready. I let frustration derail my progress during my journey. If I had asked for help from friends, family and social advocates sooner, I may have recovered physically sooner and found valuable resources to achieve self-sufficiency faster.

I have adjusted to my new lifestyle. My experiences have empowered me to encourage others facing similar challenges.

The most valuable pearls of wisdom I could pass along to people facing drastic lifestyle changes due to injury or illness would be to stay proactive and guard against frustration. Don’t hesitate to keep trying to access resources, if you find that workers seem disinterested, uninformed or otherwise unable to help you. Being proactive also means that you must be willing to embrace possibilities – both positive and negative.

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