Fighting for mobility

The following letter is being sent to Medicare because based on their description of me on paper, they think they know which wheelchair I should have.  Maybe some folks are that easy to fit.  I'm not one of them though.  I played along though and test drove the chair they want me to have.  It was a nightmare that lead to one of my beautiful new kitchen cabinets getting scratched!  It was like trying to drive a damn Zamboni through my house!  Anyway, the letter...

To Whom It May Concern,

It is important to make it known that for many years I have had a mid-wheel drive power wheelchair that has a zero turning radius and has a seat elevation feature of ten inches.  Two years ago I bought a small home and the Ohio Home Care Program spent thousands of dollars modifying my home to maximize my independence while using the previously mentioned wheelchair.  

It is also important to mention that my wheelchair is broken and I am totally without independent mobility.  This situation is going to require the Ohio Home Care Program to spend more money on my care because I will need additional hours of Home Health Aide services to assist me with ADL (Activities of Daily Living) during this time.

On March 1, 2012 I took the Permobil K450 Rear-Wheel Drive Power Wheelchair for a test drive in my home because that is the wheelchair which Medicare claims will meet my needs.  I am a small adult woman (with an adult woman’s behind which did not at all fit into the seat) and I own a small house and this wheelchair is not appropriate for me for the following reasons:

·      The base is longer than any power wheelchair that I’ve ever had and it requires more clearance to turn corners than my small house allows for.

·      The turning radius does not allow me to make the sharp, tight turns necessary for me to access all rooms of my home.

·      The seat elevation only raises 8 inches.  My workstations in my home (office and kitchen) are designed for me to raise 10 inches.

·      I felt a slight impact when I drove over transitions from a carpeted room to a wood floor room, which could cause me stress fractures.

If I am forced to use the Permobil K450 I will have all my independence taken away and be confined to one room of my house.  I will not be able to perform my Activities of Daily Living such as; assist with my meal preparation including making food choices, eating at my dining room table, pursue my education by accessing my computer and other educational materials in my home-office, access toiletries and likely many other things that I’m currently taking for granted.

Aside of these navigational issues which I just described, I am very concerned that Medicare is overlooking some vital information about my health and safety in determining which power wheelchair is most appropriate for me.

My primary diagnosis is Osteogenesis Imperfecta Type III which, is one of the more severe types.  According to studies done by the Osteogenesis Imperfecta Foundation, people who have Osteogenesis Imperfecta are likely to develop a variety of health issues that can be minimized or eliminated by using good posture and not over taxing the neck.  The following information is available on the Osteogenesis Imperfecta Foundation’s website.

Pulmonary function: Breathing problems are the main concern of many OI adults, particularly those with Type III and Type IV OI and those individuals with significant curvature of the spine. Decreased chest volume, chronic bronchitis, and asthma can lead to restrictive pulmonary disorder (a reduction of lung capacity). Rib fractures and muscle weakness also may contribute to the problem. Sleep apnea is a related problem for some adults with OI and can be determined with an overnight sleep test. During the sleep test, blood gases also can be measured for use in guiding future treatment.

Basilar Impression (BI): Also known as basilar invagination, this is a special problem for adults with Type III and IV OI. BI involves pressure from the spinal column on the base of the skull. Symptoms can include headache, muscle weakness, and tingling or numbness of hands and feet. Evaluation by a neurologist, including MRI examination of the cervical spine and base of the skull, is necessary. A neurologist should monitor BI symptoms. It has been reported that some people have BI, but their symptoms do not get progressively worse.

I already have some pulmonary issues which would be made worse if I do not have a custom made seat to help me in supporting my body’s trunk.

I do not have basilar invagination at this time.  I credit this to having had an elevation feature on my wheelchair of 10 inches for many years.  Partly, because it gives me more independence by allowing me to reach things in my home, like kitchen counters and my computer desk.  This feature also provides me with the ability to raise my seat up to look at things or people instead of putting stress on my neck to look up.  If I did not raise my seat to talk to people I would be speaking to them below the waist, as I am very small.

Please consider my diagnosis and the information I provided regarding the Osteogenesis Imperfecta Foundation and the Ohio Home Care Program.  All I want is what I need to keep my body healthy and safe at all times while not wasting Medicare/Medicaid’s money.  I strongly believe that prevention is the best medicine!  If you could just keep me in the type of wheelchair that my home was designed for and my body needs, as quickly as possible, all parties involved will benefit greatly. 

Respectfully,

Jane Hash