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Should children who use wheelchairs or special needs strollers be transferred into a car seat when riding in a wheelchair-accessible school bus?

This is the second article in a four-part series, focusing on safe transportation of individuals with disabilities, from infancy through adulthood.  The first article, Transporting Your Child with Special Needs in the Family Vehicle, can be found here.

Nathan is about to start Kindergarten and the school bus will be transporting him to and from school.    Can car seats or booster seats be used on school buses?  He was recently fitted for a customized manual wheelchair with NHTSA-approved tie-downs. Should he ride the school bus in his wheelchair once it arrives?

 

 

Safe transportation for children and adults of all ages is an extremely important topic.  Children who are medically fragile/technology dependent are at an even greater risk of injury during travel.   This is the first in a series of three articles, discussing equipment and techniques designed to protect children and adults with disabilities and chronic illnesses during travel.

 

My son Nathan, age five, has low muscle tone, global developmental delays, and receives most of his nutrition through his G tube.   He is very small for his age (weight 30lbs, length 36in.) He uses a Britax convertible car seat at home.  What is the safest way for me to transport Nathan in our family vehicle?  ~Jane in NJ

Paying for Prescription Formula: Thinking Outside the Can  is a three-part series of articles providing information regarding financial assistance for enteral formula, dietary supplements, prescription Medical Food, and the durable medical equipment and other supplies necessary to administer enteral feeds.  This article focuses on a program that provides low- and no-cost formula and supplements to uninsured and under-insured individuals, especially individuals who receive Medicare benefits.  Part 1 provides information for enteral nutrition users of all ages, and  information for adults are addressed in Part 2.   

What would you do if you were suddenly unable to speak for yourself?  How would you share your diagnoses, medication list, allergies, or advance directives with your caregivers?  The most common way for people with disabilities or health conditions to share this information is through an engraved bracelet or other piece of jewelry which can quickly be identified as a source of emergency medical information.  This article provides information regarding communication tools that can convey personal, medical, and financial information in a level of detail that goes Beyond the Bracelet.   

 I’ve been using a walker for some time but I’m falling more and more frequently.   I used to enjoy walking my dog and browsing at flea markets, but as the months go by the distance I can walk is becoming shorter and shorter.   My Doctor, husband, and I all agree that it’s time to start thinking about some kind of wheelchair or scooter.   My doctor ordered a physical therapy evaluation, but it is more than two months away.  In the meantime, I’ve been doing my own research online.  There is an incredible amount of info online, but none of it seems to fit my unique needs.  Sometimes I need someone to push me, other times I can propel myself by wheeling or “walking” my feet as I remain seated.  I’m worried that even the physical therapist won’t be able to determine what kind of equipment is right for me!  I’m too old for the “young adult” programs, but I’m nowhere near “elderly.” Sometimes I can walk short distances, and other times I can barely hold my head up.   Where do I start?

Has anybody done Disney? We are planning a trip to Walt Disney World within the next several months. Our 5 year-old daughter has Mitochondrial Disease.  She doesn’t generally use a wheelchair, but this trip would definitely require us to bring her medical stroller. Do airlines charge additional fees for wheelchairs or medical strollers?  Does Disney World offer any accommodations to individuals with medical conditions or disabilities?  Do children with disabilities have to wait in lines with everyone else?  My daughter has food allergies as well.  Should I bring food for her for the length of the trip, or will I be able to find foods that she can safely eat?  Thanks in advance for any advice!  Tabitha

I received a layoff notice today, Friday afternoon, effective immediately. It says it is due to finances, but I believe I was chosen because of my illness. Out of the four employees who have been laid off this month, I had the most seniority, and was the only full-time staff member.  I have been working full time at this office for six years.  I was the person who trained everyone currently working in my department. As a matter of fact, I’m the one who wrote the job descriptions and delegated assignments when the company changed hands two years ago!  There are six other full-time employees in my department who have less seniority than I do, and none of them lost their jobs.  I believe that my layoff was, in part, due to filing a request for ADA accommodations this past Monday. 

Last month, I received a clinical diagnosis of probable Mito, based on my symptoms and my sister’s confirmed diagnosis of MELAS.  I almost never call in sick, but the work is affecting my health.  My doctor doesn’t want me to work ten-hour days like I’ve been doing.  She told me that I need to either cut back my hours, or telecommute at least 1/3 of the time.  She also stated that I cannot lift more than 20lbs, walk long distances, or walk up or down stairs.  I know that these restrictions would not adversely affect my productivity.  In fact, I would not be surprised if my productivity would actually go up, because I would not be compromising my health the way I am now.  On Monday, I gave the letter to my employer.  She didn’t say a word about it, didn’t respond to my requests.  The accommodations I asked for included a closer parking spot, the opportunity to do some work from home which I have done in the past, and to avoid heavy lifting, which only means that someone retrieves and carries boxes of annexed files for me.   She didn’t tell me if she was willing to provide the accommodations or if I needed to be transferred to another position.  She was unusually cool and distant throughout the week.  I didn’t hear a word from her until this afternoon, when she called me into her office to break the news, and handed me a box to clean out my desk. 

I’ve been an absolute wreck.  The stress is making my symptoms worse.  I have the worst migraine I’ve had in months, I’m too nauseous to hold down anything but ice chips, and my hands are shaking so badly that I can barely hold the glass.  I’ve been pushing myself for years. Maybe part of me thought that if I kept busy enough I could forget about this awful disease and the tragic effects it’s had on my sister’s family.  As soon as I took steps to start taking better care of myself, I’m out on the street.  I finally give in and accept the label of “officially disabled,” and I become disabled and unemployed.  Two weeks ago, my GI doctor recommended IV fluid boluses three times a week for four weeks.  The infusion clinic is only open 8am to 5pm, so I would need to leave work a few hours early on the days that I have appointments.  I gave the GI doctor the paperwork for FMLA and short term disability insurance, and his secretary mailed it to the Human Resource department the next day.  I think my supervisor received the paperwork, because she nodded when I mentioned leaving early starting next Monday.  Well, next Monday never came.  The company let me go before it said a single word about FMLA or my short-term disability. So, does this mean that I get nothing? I had six full weeks of sick time saved up, and now I don’t know if I’ll be able to use it.  Can my company do that, lay me off without acknowledging my medically necessary accommodations and medical leave?  My husband isn’t home yet, and my kids are out with friends, and I’m just staring at the sparse, impersonal layoff notice…I feel so alone.  

I think that it’s safe to make a generalization: everyone reading this article has come in contact with someone who, no matter how much you do to try to help them understand Mito and other chronic illnesses, just don’t “get it.”  They listen to your explanations, glance at pamphlets or websites that you provide, smile, nod, smile some more.  However, their holiday gifts to you speak volumes.  Pajamas, more pajamas, exercise video (hint), pedometer (hint hint), jars and bottles of lotions and shower gels in dozens of fragrances so strong that your eyes water even before the wrapping paper is removed completely.  Oh, and don’t forget the six month gym membership and the DVD series about “thinking yourself healthy!” (sigh)  Sometimes the best course of action is to smile, graciously accept the gift/hint, and relegate it to a closet, at least until it can be re-gifted to someone who can use it.  In the meantime, here are some great gadgets and gizmos that you might want to give to yourself:   

I just had a ”routine”  hearing test and was told that I have a moderate to severe sensorineural hearing loss in both ears.  I had noticed that the radio, TV, and telephone were sounding a bit muffled, but I was shocked to find out that my hearing was that bad!  How could I lose so much without realizing it?  I have a niece who has Mito and was born deaf.  She had cochlear implants placed when she was a toddler, and she goes to a school for the deaf that uses both sign language and spoken English for communication.  Should I learn sign language, even though she’s the only person I know who signs?   My Mito doctor said that hearing loss is very common, especially for people with MELAS, and that it is most likely progressive.  I have an appointment to be fitted with hearing aids, but my health insurance doesn’t cover them and I don’t know how I will pay for them.  How will I use the phone if I can’t hear what the caller is saying?   I have hundreds of questions and don’t know how to find the answers.  

~A.L. in Massachusetts

 

How can people who depend on prescription formula for nutrition find assistance paying for it?  The first article of this series provided financial resources for medical nutrition for children with special needs.  Unfortunately, there are fewer programs available for adults in need of medical nutrition supplements.  The purpose of this article is to discuss the barriers encountered by adults in need of nutritional supplements, the role of federal and state health care programs in Medical Food/Enteral Nutrition Therapy/Medically Necessary Supplemental Nutrition, and potential sources of assistance from public and private sources.

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