Before I post the last of the three part series on employment, I want to point out the critical importance of using an advocate. This past week, I served in this capacity for a man who was very ill. In the emergency room, they told him they were taking him down for a CT Scan and they would be giving him a contrast dye, “like you had in November.” The man nodded but I promptly asked, “is this with iodine?” I explained that he was highly allergic to iodine. Long story short, we went back and forth, with the tech trying to insist that he be allowed to take the patient for the scan. He finally looked at the medic alert bracelet that listed one of his allergies as being iodine. If I had not been persistent, since the patient was not able to say what he was allergic to, they would most likely have gone ahead with the test. Learn more on this topic at Health Advocate-Who, What, When and Where.
I should also note that even with all of my experience as being an advocate, the hospital personnel that I was dealing with were starting to wear me down. I had been with the patient for six hours at that point and I was tired and hungry. Next week I will write more about being an advocate in difficult situations. In the mean time, you can read more on this topic at How to be a Friend with a Pen.
All to offend people who are on disability want and could work, but the job doesn’t offer the type of benefits they need or at the level their situation requires. There are a number of programs that are being tried in many different states. To know what’s available locally, contact one of the following:
• Independent Living Center for your State 713-520-0232
• Information and referral service helpline for your state: Go to www.211.org to find the helpline for your state, check the front page of your phone book
• A condition specific organization, such as the Diabetes Association, Cancer Society
Social Security can be overwhelming to understand. Many state Independent Living Centers will have this information broken down in an “easy to read” form. One example is New Hampshire’s Granite State Independent Living Center’s “Employment & Options Knowing the Options: Understanding Benefits & Work Incentives”
Other resources
Cornell University’s training manual on Social Security work incentives
Social Security’s “work site”
When it’s all said and done, you may be in the position that you will loose too much if you return to work. Some people work “under the table,” since the benefits they receive are marginal in meeting their needs. If you are able to do it, there are many volunteer opportunities, where you receive a wide array of “perks,” as well as giving you a sense of purpose.
I work with a veteran, who is on full disability. He volunteers in First Aid at our local ski resort on the weekends, which gives him a free lift tickets, passes for friends and family, ski lessons and equipment rental, as well as discounted food at the mountain and at local restaurants. He spends several nights a week volunteering in the local hospital emergency room, which gives him free use of the gym and again significant food discounts. During the weekdays, he has become the “go to guy” for the VFW. As he puts it, “I’m learning so much.” Yes, there are days he is sick and everyone understands but he has become a very important person and an integral part of many different work environments.
If you are looking for volunteer positions, check your local newspaper, town websites, hospitals, condition specific organization etc. However, if there is a place you’ve wanted to work, or try a certain type of job, call and see if they have need of your skills on a volunteer basis.
Other resources
Advocacy for Patients with Chronic Illness, Inc
Job Accommodation Network
Working with Chronic Illness This blog is run by Rosalind Jofee, chronic Illness Career Coach and author of “Women, Work and Autoimmune Disease: Keep Working, Girlfriend.”
Employment: If you have a job
Employment:: Job Hunting
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