Monday, November 2, 2009

Health Care and Attendance Policies

@Nightline As a disabled single mom who struggled with health problems to finish school and hold a job, I'd like to reply to Nightline.

The photo, taken by my daughter, Maggie, in 2003, shows me in a nursing home in Provo, UT. Notice the curtain to left for privacy when needed [this was semi-private] and red outlet on the wall to right, supplied with emergency backup power. I was allowed to bring my own furniture.

On Twitter, Nightline asked:
TWITTERCAST: If not a public option, what? What role (if any) should congress play on insuring America? Tweet to @Nightline
14 minutes ago from TweetDeck

For those of you unfamiliar with Twitter, it's an 140-character blog. Replies have to be very short. If you are 'tweeting' [answering] someone, you put @ before their username.

I think Congress should offer a health plan to everyone uninsured, to help small businesses who can't afford to insure their employees; to help the unemployed or disabled who are waiting on Social Security to declare them disabled and don't have Medicaid or Medicare. Medicaid is a mess for the poor social workers, who try to interpret conflicting rules. Can't they get a committee to revamp the system and make it fair for everyone?

A great way to cut Medicare and Medicaid costs-quit forcing the handicapped to sit in nursing homes because it doesn't fund community care, which is far cheaper, and most disabled people want care in their homes. You try sitting in a wet adult diaper while you wait for the great but understaffed staff in the nursing home to get to you, like many of my friends had to do. You try hearing your case openly discussed at the nurses' station, and by the way, you could just 'lose weight' and you'd be magically able to leave, like one of my friends had happen to her. You try waiting until 2am for your pain meds you were supposed to get at 10 pm. You try worrying about some stranger walking in your room to get at your pain patch because there's no security guard after 5pm but the front doors are unlocked. I had to deal with that. I became unable to do housework and talked my 9 year old through it, because I was applying for Social Security Disability [SSDI] and had no services from the community. I was forced to enter a nursing home. I had family back in Georgia, but couldn't leave because of my apartment lease; going into the nursing home was the only way to get out of that. I did go back to Georgia six months later, when Medicaid illegally refused to pay my bill. This had happened to 12 other people in my situation in the same month, and a lawsuit just got paid from a similar case 8 years before, to about 12 people whom Medicaid just refused to pay for their care. I saw a 98-year old woman forced to take physical therapy, cussing and complaining the whole way. Why? Because nursing homes get most of their money from physical therapy. Why force a 98-year old woman to do physical therapy she stated she did not want, and fought? How much health improvement is someone of that age going to see, anyway? Short staff situations are common in nursing homes, especially the ones Medicaid funds. No matter how caring the staff [and the staff at that nursing home were very caring and nurturing], if there aren't enough of them, patients suffer. Staff get hurt from the lack of Hoyer lifts to help them lift patients. They burn out from losing patients they care about. Some need the money so bad, they work even though they should be on Disability themselves.

Which brings me to the subject of the workplace. I worked in a large academic library, and had 3 migraine headaches per week trying to keep working. I constantly exceeded my leave. OSHA won't let you do that because it claims it's unfair to workers who can be exploited. But, libraries have a lot of projects that aren't urgent. I could've kept working for maybe 5 years, if not for the No Leave Without Pay rule. I worked with a fever, I worked when it snowed 24" overnight, I commuted 2 hours there and 2 hours back daily. It took the toll on my health. I had a TIA [mini-stroke], and my neuro warned me not to work so hard. What do you do? The Family Leave Act didn't help me, because I didn't need 6 months off at a time. I needed extra days off when I was sick. I didn't need to go to the doctor and get excuses for viruses the doctor couldn't treat, anyway.

And, this brings me to the public school and how it discriminates against the poor. Unreasonable attendance policies force the poor to take time off from work to get excuses -- again, for viruses the doctor can't treat. He just verifies, "Yes, she's sick", and we spent an hour on the bus to get there and an hour to get back. My daughter, like me, caught everything that went around. She would get a slight temp and start throwing up. I'm supposed to put her on a bus and ride 30 min to day care, only to have them tell me they can't take her in that condition? Do I need a doctor's excuse to prove she's throwing up all over the bus? A single parent without family near to help out can't afford to miss work. I only stayed home with my daughter when absolutely necessary. Yet, many times, I had to drag her to the doctor when she didn't need medicine, she needed an excuse to stay home and rest so she could go back to school, which she loved. And, doctor bills stretched our budget too far. When the budget got too tight, we stopped buying much meat at the grocery store. We didn't have food stamps. A lot of nights, I was too sick to cook, and I coached my daughter on how to heat up something simple in the microwave; noodles or rice, cans of meat, vegetables, soup. She hated it, so she begged neighbors for food because they bought things like those frozen sandwiches and mini-pizzas. She wouldn't eat meat until she was five, even at a fast food those rare times, so yes, she was skinny. Her school was year-round: 180 days like 9-month school, but it spread out the day care expense [which, for one child, was 2/3 the amount of my rent, which was in a regular apartment at market prices]. But, the year I got disabled and had to quit working, that school went 9-month and required expensive uniforms. I wouldn't have been able to afford all-summer-long day care, or the cost of uniforms. Most of this school was low-income, nonwhite parents. What was the administration thinking?

That year, my daughter fell out of her chair onto the carpet and chipped her kneecap. Later, she had a kidney infection so bad she had to get antibiotic shots [which are very painful] two days in a row. She missed a lot of days from school. Mid-year, I became disabled, and decided to homeschool. We got the truancy letter for attendance problems, and a visit from a social worker. When my daughter was in 6th grade, 2 years later, the school social worker worried that my daughter wasn't getting her education, because I was disabled. They tested her with the same tests they give all the students. Her reading was at GRADE 11.2, and her math, at GRADE 6.4; they were only at grade 6.2 at that point in my daughter's peer class. The year before, I had taken a few classes at BYU and brought her with me, with my professors' permission. They were amazed at some of the questions my daughter asked. She asked my Psychological Stats prof about parts of the brain and what they did. At 9 years old. If I supplied her with books, she sat and read quietly during class, but she would look up occasionally and listen to parts of the lecture. She's surprise me with how much she picked up, while reading.

I hope Nightline will consider these issues and talk to other low-income moms. The amount of homework given to young children is appalling. If you go to the Department of Education Web Site, and read their studies, you will find that the suggested start age for school is age 10. You read right; before age 10, a child's main need is for socialization. Just as if a child learns to walk late, usually, in two weeks they are running; so it is with school. Start late, learn fast, catch up quickly. It's all there in the studies. If I ran the schools, I would group grades K-3 [and preschool, if present] in the auditorium with a few aides and let them explore with cutting out things, playing games together, gluing, field trips, and just plain learning to get along with each other. Then, extra teachers could have smaller classes in the upper elementary grades. Behavior would probably be greatly improved. I would reduce homework; one mom I know told the school she was working two jobs and just didn't have time to supervise all this homework! Schools can't count on volunteer help. I used to volunteer at my daughter's school one hour a week when I went from 40 to 30 hours a week, just to try to keep my job. I was the last hour on Friday, so I got to see the week's log. Out of a page of volunteers, one or two showed up that day. That's a lot of load on a teacher, to expect that help and it isn't there. I missed my hour a lot because I was sick and didn't want to infect kids! Also, I would re institute parties. When I was in school, those monthly holiday parties kept me going, and I learned a lot. Parties didn't interfere with my learning, they rewarded it. I would let teachers decide when parties were appropriate.
I wouldn't ask parents to fundraise! Every time I turned around, the school had it's hand out. If I had $5, we might go have a fast food night or go someplace on the bus. I didn't mind spending it on field trips. I did mind my child being exposed to PG-13 rated movies that gave her nightmares, at 8. I would be sensitive to those of other religious beliefs. My daycare made fun of my opinion about PG-13. The school ignored me on that, and my protests about my older daughter reading James and the Giant Peach by Roald Dahl in 5th grade. The book includes profanity and vulgarity. Parents should be given options if their standards differ from the school's. Time should be given for groups of students who want to have a Bible devotional and pray, to do so. Or, for Muslim students to pray their 5x daily. Students who don't want to participate could do a fun activity or get a head start on homework. Why can't prayer be a part of schools, as a choice? Why can't parents have a choice about a club that doesn't fit their moral standards? Parents should be able to say 'no' to their son or daughter's membership in a club that doesn't fit their values. Let the clubs exist, but don't allow kids to attend without parental approval. I think a lot of schools out there are ignoring us parents. This is wrong. Everyone should have free access to schools that let the parent decide the morals. It wouldn't take a lot of hassle for a school to plan activities with diversity in mind. I'm not suggesting the school go to elaborate extremes to accommodate those of different faiths, morals, etc. I'm saying, give those whose parents object a chance for library time, or let groups of students plan and have a place to carry out those plans. This would be a learning experience for every participant, and those not taking a part, as well. I was a Girl Scout Leader, a Sunday School teacher and a substitute public school teacher, so I know what I'm asking. These kids need to learn how to work in groups, to make friends, and to earn respect.
I would discontinue all the benchmarking and yearly testing. Why not unburden our schoolteachers and let them teach, free of endless paperwork and the threat of job loss if their class can't pass the tests? DOE's own studies prove these tests are unfair to people of color. Instead, give schools with students who can't make the grade more teachers, and reduce their class sizes. These studies show that private schools have students who do better, and the main factor in this is probably the reduced class sizes. It certainly isn't more money, better books, or more skilled teachers. Students learn better in smaller groups. We set too much store by these tests, and not enough for teaching students how to live with other students, how to be good citizens, and how to reach out in their community.
Personal health has an impact in all of these areas. Students in public schools need to learn how to cover their coughs, and how to stay home when running a fever so the other students aren't as much at risk [germs can be passed long before symptoms show, but those with a fever are shedding more germs or viruses]. Have students wash their hands often. A student who is ill is not going to enjoy school as much, and may just want to drop out. Why force sick students or workers to be there, do or die? How many heart attacks and strokes do we have in our country compared to other countries? Could it be that we are so stressed out as a nation that we overindulge in the comfort foods? What's more stressful than being low-income and trying to be seen as anything other than criminals or probable criminals?
Health care needs to be for everyone, not just for kids. What happens if Susie gets a strep throat and gives it to single parent Mom who can't afford to go to the doctor, and Mom dies? I started a job in Tennessee and my health insurance had a $400 a year deductible. The three of us had strep, and I met that deductible. The first month. We ate beans for a long time, meatless chili, things like that. I had help from my family, but our crisis came at a bad time. We had just moved, and been given a lot of financial help. Nobody has pockets that deep!
We're all in this together. People at higher incomes have investments, and probably, not much cash on hand. Low-income people don't have much, period, and are in danger of becoming homeless. In the 80's, I knew a lady who became homeless, a good friend of mine. She wasn't a shirker by any standard, but she was chronically ill. I met her friends in the homeless shelter. I was low-income, but she was a lot worse off. About a third of these women were mentally ill or chronically ill. About a third were on drugs or recovering. And, about a third were escaping from abusive relationships. Of these, most of the escapee third got back on their feet quickly, because most of them had jobs, just needed an emergency place to stay while saving up for the next apartment. The third involved with the drug scene, many of them had counseling and support, and turned their lives around. But, the other third that weren't healthy, they had trouble making it. Counseling can't fix that. Medical science can't fix everything. A lot of these lost their jobs because they weren't healthy enough to meet the attendance requirements, for work or going back to school. There were a few who were chronically homeless and not about to give that up, for their own reasons. Most of these women, if you passed them on the street, had class with them, or worked with them, you would never know from their clothing or the way they acted, that they were homeless. Most homeless people can get clothes from charity pretty easily [shelters give them out], so if they have regular access to a shower, they don't LOOK homeless. They act like you, me, and everybody. Some are very likeable and some are antisocial, but most are on the likeable side, and make good friends. You can't put a label on the homeless.
The makeup of the homeless is a lot different since the 90's. Fully half are families with children, a big change from mostly singles. My friend had to let her ex take her daughter and lost custody because shelters didn't take kids. Salvation Army did, but in the middle of the day, you had to leave, and food was on her own. My friend was afraid her daughter would be hungry, so she let her ex take her. Once, she came for her visitation and the little girl was playing with broken glass in the parking lot. Dad was sleeping. Another time, a nude babysitter met her at the door, talking to someone who wasn't there. This person babysat for free, but needed care herself! My friend had quite a court battle gettting her daughter back, and nothing but behavior problems afterwards. The neglect changed her.
Shelters are harder and harder to get into. It used to be just a few days to get into a shelter, and if you needed a long-term stay, you could stay. My friend stayed for a year before getting into transitional housing and an apartment. Now, you get three weeks, and you have to leave. Transitional housing has long waiting lists. Shelters can take weeks of persistent calls before finding an empty bed. An apartment for a low-income person can take at least six month to 2 years or longer, especially for a handicapped person.
If you look at the problems of poverty, health is a big issue. If our country were to provide health care, even at a percentage of salary, for everyone who needed health insurance scaled to income, Medicaid budgets might not need to be at the high levels they are now from state budgets. After all, society suffers when preventable illness becomes deadly because someone couldn't afford an inexpensive screening. Advanced cancer is much more costly to treat than removing a tiny growth. We don't have to insure the entire country at once. All we need is an option for those who can't afford health care. We need governments to do what we cannot do for ourselves, for our families. We need roads and bridges. We need a school system. We need laws and rules. Apparently, the insurance system is broken, and we low-income folk look to our Congress and our President to help us with this. How can legislators who make $70,000 a year or more understand me? My income is less than $20,000, and I have a daughter in college. I have Medicare and Medicaid, but anytime now, Social Security can decide I am no longer eligible to draw Disability, and I can lose my house I bought under GA Dream Program, a HUD program. It has happened to friends. Not long ago there was an outcry to cut all dual-eligibles from Medicaid. If they do that, I lose my personal care aid, who helps me take baths, heats up food for me, does light housekeeping to take some of the burden off my daughter, my primary caretaker. Look carefully at my face. I am a dual eligible. I get Meals on Wheels. I have to pay for my monthly personal care aid and food [most people are shocked that I have to pay anything, at my income]. I am at the mercy of Congress and its whims. I feel no one represents me and people like me, except maybe Mr. Obama, and all he gets is criticism. I hurt inside for all the people I see around me struggling to keep working, when they should be able to get Disability. And, I feel awful for all the people I run into when I'm waiting at the Department of Family and Children's Services, or seeing a counselor for handicapped services, or infrequent trips to the Social Security Office. I'm not out and about very much; about 90% of my days are spent literally in bed. Yet, when I meet others who have handicaps or health problems, many have applied for Disability and have been turned down. These strangers that I meet for a few minutes break my heart. So many need Disability and cannot get it, or face meetings with embarrassing questions, or see a different doctor who says they aren't handicapped and lose their Social Security. I had to fight for four years to get it. You apply for Social Security Disability, and 90% are denied. Some people give up at that point. You can ask for them to see your file again; this is a Reconsideration. About 50% are denied at this point. The next step is to get a Disability lawyer and submit medical records, an expensive and time-consuming process. There are Social Security doctors to see, and some are combative. You get your day in court and come out crying, even if you won, because it's a combative process, because it's the final proof that you are disabled and can't work. The psychological toll of not being able to work, of exceeding your leave, of worry over the possibility of losing your job, of being fired because you're sick too much, and maybe being accused of being alcoholic because you miss a lot of Fridays 'cause you just can't make it one more day. The Mondays because you got sick all weekend from trying to make it through Friday. The way people tell you, "oh, you could work if you just wanted to bad enough". What a thing to say to anyone! Or, the people who got disabled and somehow overcame it, and berate you because you "didn't have the guts to get out of that wheelchair". I liken it to the Olympics. Most people can learn to swim, but very few will ever be good enough at it to go to the Olympics. Those folks who did escape disability, that's wonderful, like winning a gold medal! But don't assume that just 'cause you won the gold, that everyone can do it. There are too many ads by agencies that help the handicapped portraying the handicapped as 'courageous', 'brave', or 'strong'. I never feel any of those things! See my other post, a reply to the lady dying of cancer who said she wasn't, either. People go through bad things. They deal with it. It's not like choosing to be a hero! But, should they be treated like they are morally deficient if they can't pull themselves up by their bootstraps? I did, for years, until I got to the point I just couldn't do it any more. I've been disabled since before age 7. Everyone walks down a road that's just too long, at some point in their lives. I am a little over 50, and hit that point at the young age of 40. If I could've had some jobs that didn't require me to lift tens to hundreds of file boxes or bins of cans, or books, I might not have become disabled. Or, if I could've taken leave without pay during the winter, at times. In every library job I had in my adult life, my bosses said my work was so good, they could put up with my absenteeism. Personnel was sympathetic, but blamed OSHA. In the meantime, I had a daughter to support, and I couldn't expect my family to support me.

Nightline, you have probably heard many stories worse than this, and solutions by more learned people. Our country has a crisis.Will our legislators argue until another year, and another passes, and nothing changes? I think even an imperfect, flawed National Healthcare Plan is better than sitting on our hands afraid to do something because it doesn't please everybody and their brother. If they can't come up with a plan, why not take all the ideas and do little plans? I pay outrageous school taxes but my daughter is in college, not public school. In fact, she saved them a year's worth of expense by taking her GED and entering college a year earlier [her choice because she didn't like online high school and didn't want to attend public school]. She was a GED honor grad with a trophy to prove it. As her mom, I am praying she will do what I couldn't: Finish school, and continue her dream of becoming a nurse. She wants to get out of poverty and support me. She could've gone off to Idaho to BYU there, and left me to fend for myself; but she decided she wanted to support me and stay with me. My daughter is proof there is hope for this younger generation. Her peers at Andrew College seem to be more interested in partying on the weekend instead of studying as she does. My daughter has ADD, and her studies take more of her time. But, she's a good B student in her second year. She is proof that poverty can't stop a person with good goals. Every day she walks the three blocks to school and back several times, to let our dog out and check on me. She has a painful knee that bothers her when it rains. She gets sick more often than her peers. Last Friday she missed class, and the opportunity to dress in her much-awaited Halloween costume, because of a really bad migraine. But, my daughter keeps going, as I tried to do in college. My mistake was trying to work and put myself through. If I had it to do over again, I would go full-time and put up with the debt. My fear of debt left me with Senior standing but no degree, because my health ran out. I have hope that my daughter will make it, and I pray she does not get disabled, at least until she retires.

Thanks for listening.

Dannis Cole
[Note: I am on food stamps, but started my own publishing company, to keep my mind busy. I use free web hosting, 2 print-on-demand companies that don't require up-front payments, and I visit libraries and schools when able to leave the house. I have dreams, too.]

Posted via email from Dannis' Posterous From DanniStories

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