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|Newsletters: The Bumpy Road to Independence|
The Bumpy Road to Independence
Bette Bond, Home Infusion Consumer
Bette Bond was on HPN for several years and now infuses lipids and pain medication. Below is her story on getting through college, finding a job and gaining her independence in the process, as told during the Oley Conference in Boston this past summer. As with all articles in the LifelineLetter, the advice given below reflects the experience of the author; before making any changes in your health care, insurance coverage, disability status, etc. the Oley Foundation recommends seeking an evaluation of your own, personal situation by the appropriately trained professional (physician, lawyer, caseworker).
The one thing I want to stress, is that you, consumers, need to be active for yourself. There are many resources to help you, as an adult, or a child who’d like to become independent. The problem is that you are not usually told what resources are out there, what’s available to help you or for your family to help you.
My story began when I was in high school. I had been sick as a child, but my condition became much worse when I was 16 years old. High school, for me, was really messed up. I didn’t get to do most of the things normal teens got to do. I had to go on home tutoring for my junior and senior year. I had been going to a Catholic high school, but ended up with tutors from the public school. When I finished my educational requirements, the Catholic school wouldn’t graduate me because they didn’t want to accept the public school tutor’s grades and they wanted me to have a ‘normal’ senior year. I would still be in high school today according to their standards, but fortunately the public school accepted my grades, and I was able to graduate.
After high school, I took a couple of years off because I was in and out of the hospital so frequently. Eventually I got to the point where I was thinking of taking just one college level class to see if I could do it.
Starting College on the Right Foot
College was amazing. Colleges have these offices which serve as a resource for ‘disabled’ students. Different schools have different names for them, like the “Office for Students with Disabilities;” but every college has one, whether it’s a community college, junior college or a university. If you have a child, look for that office, because they can help you navigate through the system.
I started at a community college taking one class. I went into the Office for Students with Disabilities, and after speaking with one of the counselors, I got first pick on the classes offered later in the day. That was a better schedule for me, because I was usually very sick in the morning after getting off the TPN. I was also able to make arrangements for special testing situations. If my class was only offered early in the day, I was allowed to take tests for that class in the afternoon. And then, because of blood sugar problems, I was allowed to take breaks during the test to have frequent meals. They can accommodate for most special needs like this.
Just having to deal with illness and pain can make it difficult to process everything. So I requested extra test taking time. The one stipulation, is that you must have your needs documented ahead of time. This is especially important with major exams like the SATs, college entrance exams and college boards. The best time to do that is when your kids are young. Have it documented now and it will follow them through high school and into college.
When I was in college, it was very nice, everybody was so accepting. Yes, you will run into a few people who will give you a hard time, but it’s rare. I remember one morning I hadn’t finished my nutrition because my pump wasn’t working. I needed to go to class because we were reviewing for a big test coming up. I thought to myself, “What can I do?” I was reluctant to go to class still attached, and even if I went, it would be difficult to accommodate: I was infusing by gravity since the pump was broken. We called the school and explained the situation. They took the classroom’s skeleton off his rack and brought the rack to the back of the room where I infused during class. It wasn’t that noticeable, and it didn’t bother me; I just was glad to be in class.
Taking on a Bigger Load
Over time, I slowly built back up, taking two classes, then three, as I could tolerate them. A few times I had to stop for a semester and go into the hospital, but even with that, the college worked with me. I had started one semester and got four weeks into it, when I wound up in the hospital and ended up staying until the summer. On her own, the anatomy instructor spoke to a student, and had her take notes for me. The instructor taped all the classes for me and dropped them off at the hospital, which was an hour away. In the end, I had to drop that semester; the hospitalization had been too long, but there is always a way to work things out. Even though I had breaks, and it took me 10 years, I was able to graduate from college with a Bachelors of Science in occupational therapy.
At the community college, I was invited into the honor society and began doing a little community service. That was helpful for me. It got me out, interacting and communicating with other people. This may sound funny, but I was worried about what I could talk about. All my experiences were around the hospital. So I made a point to read two or three articles each day in the newspaper. Then I’d go to the community center and ask people questions about the articles I’d read in the paper. That’s how I started conversations and made friends — it was really helpful. Communication skills are something to think about with your kids, because when you are in the hospital a lot, it’s difficult to think of other things to talk about. As adults we take these skills for granted, but children growing up removed from normal social situations need to be taught how to interact with people.
Interacting with groups on campus also got me out and doing things, instead of just sitting at home. I was able to slowly build up my endurance. I actually starting going to conventions with friends. Traveling showed me that — even if it was only one night, and maybe it was only two hours away — I can deal with this stuff all on my own. I don’t have to rely on my Mom or someone else to take care of my TPN.
When you are young, you rely on someone else to take care of everything. The transition into caring for yourself can be overwhelming; so it was nice to have these little trial nights. These are something to encourage your child to do. Even if you are an adult going through a time of not working, you should volunteer and go out. It’s something you can feel good about, and again, it can help you build up your endurance.
After I graduated from the community college, I moved on to a four-year university. There again, I went to the disabilities office. I had all my classes arranged and I was accepted into occupational therapy (OT) school. I ended up going full time and trying to live on campus that year. I got a dorm room with a full kitchen so I could prepare my special meals, and have enough refrigerator space for my TPN and medication. The school was very accommodating. My supplies were delivered to the dorm office then brought up to my room so I didn’t have to carry anything. College administrators can be very helpful, but it’s up to you to find the right people and talk with them. One tip is to talk to students who are already there; they will give you cues on who is best to talk to about a specific need you may have.
Living in the dorm was great because it allowed me to live day to day with my peers. I ended up sharing a room with a classmate. Originally that was not my plan. I wanted my own room. Besides, I didn’t think anyone would want to share a room with me because of all of the noise my pump made at night. Somehow things got mixed up, though, and I ended up with a roommate. It worked out wonderfully. She was a great roommate; nothing bothered her at all. In fact, she joked about getting a special storage area out of the deal, since my supplies took up all of the closet space in our room.
The first year was a little hard on me. It took all of my energy going to school full time. I would wake up, go to class, do school work, get connected and go straight to bed — when all my friends were out partying. The second half of the semester, I started socializing with them more and that was wonderful. The program went very well and I was able to continue going full time. The school worked with me on test taking time, etc. Later, I ended up renting a house with my cousin off campus. It was nice trying to live on my own with a relative. I didn’t want to go back home because I was already out of my mom’s niche. So I asked my cousin if I could move in with her. My parents were still close by if I needed them, but it gave me a chance to be on my own and do things for myself.
Getting a Job
Eventually I finished the OT program and graduated. Graduation was sort of scary because it started me thinking about what I was going to do next. I needed to start looking for a job. I had finished three internships which showed me I could actually do the work of an OT. (I was worried whether I could physically handle the job, and whether my pump would get in the way.)
Just thinking of job hunting was stressful. The idea of an interview was scary. I didn’t know what to say, and more importantly, what not to say. I ended up going to the occupational vocational rehab (ORV) office. They had given me a scholarship to help pay for my education with the hope that someday I would become self-sufficient. I had another scholarship from the honor society, which was helpful as well. The ORV officer sat down with me and told me which questions employers can and cannot ask. He explained that if they ask you certain ‘illegal’ questions, you don’t have to answer them. The OVR helped me write a resume, and gave me mock interviews. One of my OT supervisors also gave me a lot of support through the interview process. Again, there are a lot of resources you can tap into, if you make the effort to find them.
When it finally came time to interview, I ended up buying a nice suit; but since I am connected 24 hours a day, I wondered what I should do about the pump: “Do I take it off for the interview, or do I wear it?” I decided to wear it so they could see that this was the real me.
For the first interview, I had my pump in a nice little purse and I carried a clipboard in front to cover the tubing. The whole interview went well and they didn’t notice the pump at all.
My second interview was at a major rehab facility. An acquaintance had told me they had an entry-level position that I should apply for, so I did. I ended up getting an interview. There were six people on the interview. The interview went very well for the first half. Everybody loved me and everything went well. We talked about all kinds of things; they asked how I would handle certain situations, etc. Then most of them left. I was one on one with one of the women and I dropped my purse on the floor. She saw my tubing and I thought, “Okay, here goes.” So I mentioned something about the pump. After that, the interview fell apart. She would no longer look at me. She just abruptly stopped the conversation and announced it was time for the tour. On the tour, she stopped and talked to a friend of hers for twenty minutes and did not talk to me. Once I tried to jump in on the conversation, but she gave me a curt response and turned back to her friend. At the end of the interview she said something to me about letting me know in a couple of weeks. I asked if I should call back and she said “No.” A few weeks later I received a letter in the mail stating that they had no position available, no opening for an occupational therapist. That blew me out of the water!
For awhile I was devastated, but I had an interview at another company scheduled. I still didn’t know what to do. Should I tell them about my pump or not? After my last experience, I was torn. Finally I decided I was just going to be me and see how it goes. I went in and talked with the people and everything went wonderfully. On the way out, I said to the woman, “Oh, by the way, I just want to let you know that I’m connected to this,” and showed her the pump. She replied “That’s wonderful. It will give you a better understanding of what our kids are going through.” And then, right there on the spot, she said, “The position is yours,” which was great.
I’m telling you this so you will know that there are jobs out there where people will accept you. Of course you are going to run into some people who won’t, but there are good employers out there, you just have to look for them. One thing that worked out well for me is that my supervisor has had a line in for chemotherapy, so she is very understanding. In fact, everyone at work is accepting of me. At first I tried hiding my pump, but eventually I decided that these people are my friends, so I told them about it. Everybody knows and they are all accepting. Once a month we have these luncheons, and now they are making their food to accommodate my needs, which is very considerate.
Choosing Insurance Coverage
One good idea is to try to get your child qualified for disability coverage through Medicaid (Medical Assistance), or better still, through Medicare. Medicaid is the health insurance that comes with Supplemental Security Income (SSI); eligibility for Medicaid and SSI is affected by income and coverage varies by state. Medicare is the health insurance that comes with Social Security Disability (SSD). The good thing about SSD, is that it’s not based on income, it’s based on your condition. I found transitioning to financial independence easier and less stressful with SSD/Medicare (than SSI/Medicaid), but qualifying your child may be difficult. In certain circumstances, your child may be eligible for some coverage under both SSI/Medicaid and SSD/Medicare.
Medicaid/SSI really helped me to maneuver my way through the system. It was a fight. It took me three years, but once I got on Medicaid, it covered everything, so I didn’t have to worry. I had some coverage from my parent’s insurance, but when I approached their policy’s maximum lifetime benefit, I knew that I had Medicaid to fall back on. And even though it was very modest, having my own income from SSI helped me gain a little independence from my parents.
The catch with Medicaid is, if you make any money, your benefits are affected immediately. As you start earning money, your monthly SSI check will likely be decreased, (even if you make as little as $65 a month); and if you lose your SSI and earn more than another modest threshold, you may lose your insurance coverage. So if you rely on SSI, it’s nearly impossible to see if you can handle full time responsibilities; you cannot make enough money at your job to become self sufficient, or put in enough hours to get insurance through your employers, before you loose your SSI benefits. It is too risky.
[Editor’s note: The Work Incentives Act tempers this a little by allowing you to retain your Medicaid coverage even after you are working, although depending upon your income, you may be required to pay a portion of your medical expenses out of pocket. The Work Incentives Act also includes provisions for an easier, more supportive reinstatement of benefits process should you become unable to work and need SSI benefits once again. For more information call Social Security, or visit their web site]
Although the eligibility requirements may be difficult for young consumers to meet, you may apply for Social Security Disability (SSD). (Essentially you must have worked enough to qualify for benefits on your own; or be able to draw down on your parent’s entitlements which requires that they be receiving benefits themselves.) During one of my reviews for SSI/Medicaid, my caseworker suggested I apply for SSD since I had worked enough quarters to qualify. After I got on SSD, the total amount of income I received each month from the government remained the same, but now some portions of my check came from SSD, rather than just SSI. After two years on SSD, I automatically received Medicare insurance coverage. Because I wasn’t working when Medicare kicked-in, for a while Medicare was my primary insurance and Medicaid provided my secondary coverage; Medicaid actually paid all of my Medicare copays and even my Medicare premium. (Editor’s note: this coverage is only available in certain states.)
When I first started looking for work I was really worried about keeping my insurance coverage. Before I even applied for jobs, I asked questions at Social Security. I spoke to several different people because sometimes you can get one story from one person and from another it could be a little different. So I spoke to as many people as I could, to make sure that when I did start working I knew what I needed to do to keep myself covered. I used this same proactive approach before I moved or got engaged, since these actions could potentially affect my benefits too.
Once I started to work for pay as an OT, I had a nine month trial period when I was able to earn money, but still receive my SSD check. (My SSI and Medicaid was discontinued with my first pay check.) I was also able to keep my SSD insurance benefits for three years from the date that I started working. Once a year, though, I have to be examined by one of Social Security’s approved physicians, to show that I still have my medical condition. Well for me, everything has worked out fine. I had my review earlier this year, and because of the Work Incentives Act of 1999, I can keep my insurance coverage for up to 93 months (nearly 8 eight years). There’s even the possibility of new legislation passing that would enable me to stay on SSD forever, which would be great.
My employer reimburses me for my Medicare premium, which is very nice of them. I don’t believe they are required to do that. I chose Medicare over my employer’s plan because Medicare has slightly better coverage and because I was concerned about retaining good coverage for the long run. Employers can change insurance plans every year. By staying with Medicare, I know my medical needs are covered, even if my employer switches to a new insurance company or a new plan. Staying with Medicare also makes it easier for me to switch jobs if I need to, and gives me more flexibility in my choice of a future employer; if I want to get insurance coverage through work, I would have to find a company with a large enough pool of employees to absorb my insurance coverage needs.
Everybody tells you you’re not going to be able to work full time: you need your insurance coverage, and the coverage through Medicare or Medicaid is much better than any private coverage you could get. This is drilled into your head when you’re first diagnosed, and resurfaces with each crisis you go through. If you’re not careful, the whole notion of being ‘disabled’ can be debilitating. In my case, I was so afraid of loosing my insurance coverage, that for a while I was afraid to even try to get a job or to move; but you know, it’s not that way. You really need to think through all of the details, and brainstorm the “what if’s” of every possible scenario, when considering your insurance needs; but with hard work and persistence, you can pursue the meaningful career you want and have the insurance coverage you need.
Questions and Answers
Dr. Howard (facilitator): Well, that’s a very heart warming story told in very positive terms about a journey that was probably quite nerve racking at times. Are there any parents who want to ask Bette questions or make comments about their situation?
Anna Cyr (mother of two daughters on HPN): What you just said gives me the most hope for my older daughter’s future. She’s extremely bright. She wants to be a marine biologist. She’s determined that’s what she is going to do. You’ve answered a lot of questions and a lot of fears for us. Thank you.
Bette: That’s the best thing about the Oley Foundation. When I first came to Oley, I was only taking one class. I had no hope for a future, nothing. When I came to Oley, I saw people that were working. They were making a living. They were living on their own. That gave me the best hope; and you know, once you have that hope, you can go far. Kids can make a life, and they can become independent; you just have to know the resources out there and tap into them.
Sheila Messina, RN, MA (HPN consumer and health care education and training specialist): I remember Bette asking a question at an Oley conference a few years back. You were in OT school at the time and you were concerned about being able to work and still keep your insurance coverage. You had felt like you were locked in. It’s wonderful to see there are no barriers now. Sometimes we create our own barriers. It may appear that there are barriers out there, but you can chip, chip, chip away, and eventually you will succeed. You’re a wonderful testament to that.
Bette: Thank you. I think with the right job you can succeed. Your outlook and persistence can make a huge difference. For example, as an OT there are many different areas that I could go into. Where I am working, if I’m not feeling good one day, I don’t have to jump around with the kids. I can sit down and do a tabletop activity that day. We have people that help, so even on days that I’m not feeling good, I can take it easy and do what I need to do without using a whole lot of energy. The staff members are very understanding too, and on those days, they help out a little bit more. You can adapt your work to fit your lifestyle, to fit your needs. You just have to be very creative about it.
Bruce Grefrath (HPN Consumer, Oley D.C. Representative): I just want to add that right now labor is a scarce commodity and it’s going to get much more scarce in the next 10 years as the baby boomers begin to retire. So there are tremendous opportunities here for us to go back to work on our own terms. When you start talking with employers, they are much more willing to cooperate, to look out for your needs. I think if you find yourself a job, that you should talk to the person in the human resources department that serves employees with special needs. Make sure they know about your condition and needs from the beginning, so you’ll have some protection under the Americans with Disabilities Act.
Dr. Howard: We are going to draw this session to a close. Thank you to our speakers. Anything else to add Bette?
Bette: Oley has done so much for my life. I just want to tell others that you may not be there now, but you will get to a point in your journey where you really want to live with this therapy. There are times when you’re living in bed all the time, but somebody pointed out to me once that it’s just your outlook on life that needs to change. It does take time — especially for people who are newly diagnosed. First you’re in denial and you just don’t want to deal with it. You think, “This is not me, I’m not going to touch it.” And then eventually you get to a point where you think, “Okay, maybe I can do this.” As a friend told me once, “Just look at the TPN as a means that is letting you live your life.” I have said this before, but my pumps are to me, like wings are to an eagle: they allow me to fly and be free. When I first got on, I kept thinking, “I’m just like a dog. I’m on a leash. I’m stuck to this thing.” The pole was bigger than me: I couldn’t even move it! But it’s not like that anymore. I see it as a vehicle that allows me to fly and to experience my life. Yes, there are going to be ups and downs. Yes, I may not be able to eat certain things and may have surgery again; but I can still be happy and make the most of what I can do. As long as I can be the best that I can be, I’m just very happy. I’m thankful for my friends and my mom and for all of you who gave me the inspiration to do what I can. Thanks!
Special thanks to Bette for sharing her experience with us, and to Carol Pelissier and Robin Lang for transcribing the video taped session this article is based on.
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