11,800 hours… This is the amount of time it has been since Kit’s initial contact with the Bureau of Blindness and Visual Services (Pennsylvania). In this time she has had only 6 (six) hours of Orientation and Mobility services. This is basically an evaluation phase and not really considered official training.

My own Orientation and Mobility training and first contact didn’t take nearly as long as this. In fact from my first contact with Montgomery County to the time I actually started O&M training I’d guess was about 4 months. After this it was basically uninterrupted services until I finished.

Why such a difference?

It truly is mind boggling the difference in the level of services provided. Simply put the Bureau of Blindness and Visual Services (BBVS) is a state run organization and they serve a vastly larger area then what the Montgomery County Association for the Blind does.

The reasons we chose to go with BBVS for Kit’s services as opposed to MCAB (where I had mine) where really simple. We knew some one who worked for them! The instructor had oodles of free time and would basically be able to see Kit at any time through out the week… even offering training on weekends if needed. – This would be a great option, because at the time Kit was still seeing multiple doctors, and could not really settle into a fixed schedule of weekly visits like I did.

Our instructor friend gathered all of the necessary paperwork they needed and submitted it to BBVS for review. Countless misplaced documents and lost faxes (otherwise known as the BBVS Business Office black hole) and some necessary certification red tape later – about 12 months later…!

Kit was finally cleared for her evaluation time of 6 hours around the middle of October 2011. The evaluation is a way for the O&M instructor to gather information about the student and assess their needs; and is a means of determining a lesson plan to continue future O&M training with set goals. – Kit obviously needs more training. So this was noted in the O&M report – this report is then sent to BBVS as a request for more training hours. (This is how instructors get paid for their time).

This is where we stand today.

The request for more training hours was submitted and we can only guess it’s sitting on some ones desk (or the quantum singularity of a black hole). – The latest we hear is that BBVS simply “does not have the budget” to provide training at this time. (as of February 2012).

I have contacted a few advocate groups. And it’s funny that the mere mention of the Bureau of Blindness and Visual Services (Philadelphia) office brings groans of dislike and drudgery. To be told that it’s COMMON for clients to wait 12-18 MONTHS before they receive services. This is truly disgraceful!

The fact of the matter is that Kit’s life – and to an extent mine… is on hold until she can get proper Orientation and Mobility training. She is not an independent traveler. She can not cross a street, navigate to a chosen location, travel in unfamiliar areas or ride the bus to meet up with friends. More importantly she can not independently travel to her doctors appointments! Also basic safety skills could be significantly improved if she had proper training. (blind people call this “self protection techniques”. – not knocking your head on the cabinet, for example). These are all things a properly trained Orientation and Mobility specialist would teach.

It seems the consensus in “Big Government” is that it’s OK to wait for services. After all, a disabled person has nothing better to do with their life. I suppose they think it’s cheaper to pay SSI benefits of $8000-$12,000 a year then pay for proper training that would allow the person to get off of SSI and off ‘the system’ to get a real job.

 This is far from over.

Feel free to re-blog this article or link and distribute in any manor you see fit. If you know a representative, advocate, or a good lawyer, by all means pass it on! As always comments are very welcome. (Kindly use the form below.)

Possibly Related Posts:

• Orientation and Mobility: Will you guide me?
• Between Life and the Keyboard – Part 2
• Between Life and the Keyboard
• Orientation and Mobility: SEPTA Regional Rail – Part 2
• Orientation and Mobility: SEPTA Regional Rail – Part 1

As I completed my Mobility training with Elaine and look forward to my new life with Kit. I never thought that I would be teaching some one else the lessons I’ve learned. But here I am. The one I love is blind and in fact Kit is more blind then me. Kit has limited light perception and can see shapes, shadows, light and dark… and only some color in her left eye and she is completely blind in her right. Kit’s blindness was caused by non-cancerous tumors forming around her optic nerves from Erdheim–Chester Disease (ECD).

No one ever expects they would become some one else’s eyes to the world. But that’s essentially what I am for Kit. Not that I mind being a human guide dog… In fact I quite like it. Besides she thinks I make great arm candy! Though she complains about not being able to properly grip my arm for proper sighted-guide technique. (Sorry I can’t help my massive triceps, after all you are marrying a judo instructor).

When guiding a blind person you use a technique called sighted-guide. This allows both people to travel safely and quickly. The blind persons safety is the responsibility of the sighted-guide. The blind person grips the sighted guide’s arm just above the elbow. Your guide should walk a half step in front of you and to the side. As you begin to walk, your guide should always remain in front, explaining the terrain ahead.

If the two of you are approaching a narrow space, your guide should signal the change by putting his hand behind his back. You then move directly behind your guide and slide your hand down to the guide’s wrist.

When approaching the drop off, your guide should stop with his or her toes close to the drop off and announce: “Curb up,” or “Stairs going down“. Then, the guide should step forward and allow you to find the stair or curb with your toes. If there is a handrail, your guide should always position you on the side of the handrail and let you know where it is so you may use it.

When going through a door, you will need to know two things from your guide: 1) Does the door open to the right or to the left? and 2) Does the door open out or in? If the door opens on the right, you should be on the guide’s right side. If the door opens on the left, you should be on the guide’s left side. This may require a change of sides.

Some tips for sighted guide:

• When approaching someone with vision loss who appears to need help, ask, “Do you need assistance?” Do not assume the person needs help. Typically, people with vision loss know where they are going and do not need assistance.
• If the person does need assistance, touch the back of your hand to the back of the person’s hand. (Announce that you are going to do this first.) This gives the person an idea of where your arm is located.
• Ask, “Where do you need to go?“
• Do not leave the person you’re guiding in the middle of an open area. Guide him or her to the final destination before letting go, and tell the person you are leaving.
• Act as the person’s eyes. Remember, he or she is counting on you to provide accurate information about the environment. Announce obstacles, such as a curb, stairs, or other danger points, before getting to them.
• Remember to frequently check over your shoulder on the side that the person is walking on for potential obstructions and other danger points.

Needless to say Kit and I have gotten very proficient with sighted guide technique over our time together. We walk almost daily at the mall. And I’m happy to report that with simple walking (mostly), Kit lost nearly 60 pounds since we’ve met. (Weight she gained while on medications).

Please consider donated to Erdheim–Chester Disease research and help people like Kit and others affected by this condition. The Erdheim–Chester Disease Global Alliance is a non-profit tax exempt organization.

Possibly Related Posts:

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• Between Life and the Keyboard – Part 2
• Between Life and the Keyboard
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• Orientation and Mobility: SEPTA Regional Rail – Part 1

Several phone calls later, some as I was still doing Mobility training on the train in Philly. I was invited by Kit to visit King of Prussia Mall with her. She told me it would be her and her sister coming to pick me up. – Could it be? Was this a… DATE? Sure enough Kit arrived on a very snowy winter day with her sister – and, her mother… and her father! Crap, so much for subtle family introductions!

A short time after this innocent little “date” at the mall that I was still a little clueless about. And a few more phone calls… Mom and I where invited to Kit’s house for Christmas dinner. Sure enough the night was fun filled with talk and good food. As I was sitting next to Kit talking, the time was getting late and it came time to leave. She placed her head on my shoulder and whispered shyly “Can I come with you; can I spend the night”. (Gulp)… “I don’t want to let you go”…

Kit headed off to the kitchen to have a private conversation with her parents… as I wait nervously with my heart pounding… “Well you are almost 30” I hear her father say. – So, with the OK from her folks Kit was off. As her mom gathered things for the nights stay, a change of clothes and the all important medications. (Kit was on nearly half a dozen at the time). Kit was free! – and I had a girl spending the night! Things sure do happen fast, don’t they?

A few days later it would be Kit’s birthday (December 31st), and she would spend the night again. This time things would be a little more planned. I gave her a nice bouquet of Stargazer Lilies (one of her favorite flowers) and a nice sterling silver angel necklace for her birthday.

It’s official, we where dating…

So, as you see things moved quickly along with Kit spending more and more time with me. As I really could back-blog this story for a very long time I will stop here… It’s time to move forward.

On December 21st, 2010 – during a Full Lunar Eclipse – (actually the morning after). I took to one knee and proposed to Kit… Simply saying “Don’t open it unless your ready…” But she did… and of course, she said YES! See our engagement story as shown on NBC10 below!

This eclipse was the first total lunar eclipse to occur on the day of the Northern Winter Solstice since 1638. How romanic and unique? Sorry if you want to try this yourself, you’ll have to wait another 372 years.

Life moves on…

Ah, but of course the ring has it’s own story that I’d be willing to tell if any one wants to hear!

Possibly Related Posts:

• 11,800 hours… a failure of the Bureau of Blindness and Visual Services
• Orientation and Mobility: Will you guide me?
• Between Life and the Keyboard
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• Orientation and Mobility: SEPTA Regional Rail – Part 2