Diabetes is when your body does not produce or use insulin and you end up with high levels of blood glucose. This condition causes complications in the rest of the body which can result in heart disease, stroke, nerve disease, and vision loss.

There are two types of diabetes: Type 1 also known as juvenile diabetes and Type 2 or adult-onset diabetes. A person with Type 1 will be depended on insulin and there is no cure. Type 2 is more common and some people are able to regulate it with diet and exercise, others may need insulin or another medication.

Diabetic retinopathy is an eye disease that is caused by diabetes. All people with diabetes are at risk of diabetic retinopathy but the risk increases with age. Diabetic retinopathy damages the small blood vessels that are on the retina which can affect your central and peripheral vision along with depth perception, color perception and contrast sensitivity. If left untreated the broken blood vessels may leak into the eye, causing the person to seek “spots, flecks or floaters” and can cause total blindness.

Once a person is diagnosed with diabetic retinopathy it is very important for them to see his/her eye doctor on a regular basis to try to regulate the diabetic retinopathy and to watch for other conditions that may arise such as cataracts and/or glaucoma.

Diabetic retinopathy has no warning signs; which is why it is so important to have annual eye doctor appointments with dilated eye evaluations.

If you have questions about diabetic retinopathy or another eye disease, please email me at mandy.smith@rcilinc.org.

Please watch the video to find out about Heidi’s story.  Being at home is important and so are home and community based services!

My name is Elise, I suffer from Diabetes, Fibromyalgia, Spinal stenosis, Bile duct reconstruction, Parkinson’s disease, depression, and anxiety.  I also just had open heart surgery. I live with my husband Bill Fears who suffers from Alzheimer’s disease and Parkinson’s disease. I have a son who lives here in Ottawa and a daughter in Tulsa. I moved to Ottawa from Illinois to be closer to my son.

I am on the Physical Disability waiver. I have a direct service worker who comes into my home to help care for me. My DSW (Direct Service Worker) cleans the house, does laundry, cooks, runs errands, helps me with bathing, and is a real support system for me. It would be very hard if not impossible for me to get things done around the house without my DSW. Some days with the fibromyalgia I can’t get out of bed. My DSW also helps when the depression and anxiety gets bad. If I did not have a DSW Bill and I would most likely be in a nursing home.

 I took advantage of the Peer Specialist Program at RCIL. I worked with Peer Specialist Rebecca at the Ottawa RCIL office, I created an Independent Living Plan that helped me figure out what to do about my vehicle that I was having mechanical problems with. It went very well working with Rebecca & I feel it was a success. I would use the Peer Specialist Program again & I would recommend it to my friends.

I am thankful that RCIL is there to help me, RCIL helps me stay at home, and RCIL helps me stay living independently. Taking away Centers for Independent Living in Kansas would hurt the people who need them the most. I certainly could not keep my husband at home with me if it were not for my DSW and RCIL. If I could tell the legislators something it would be this. Please keep Centers for Independent Living budgeted. So we, who need them, can stay Independent & stay in our communities. We don’t want institutionalization & I REFUSE to live in a nursing home. I don’t want to be confined, I don’t want to be told what I can or can’t do, I am not a 66 year old child, I am a 66 year old grown woman, and I would like to be treated as such!

This is Elise’s story, if you would like to share your story of independence, please email it to mandy.smith@rcilinc.org.

An emergency or disaster can happen at any time. Do you have a plan in place to help you keep in touch with your family and friends? What about some of basic essentials like food, water, electricity or even telephones? While each person’s abilities and needs are unique, every individual can take steps to prepare for all kinds of emergencies from fires to tornadoes to floods.  It is best to prepare for an emergency ahead of time by making an emergency plan that fits your own personal needs and those of your loved ones.  Follow the 3 steps listed below to create a plan for any disaster. 

Step 1 Get a Kit: put together basic supplies, medications and medical supplies, an extra set of wheelchair batteries, etc. and copies of important documents.

Step 2 Make a Plan: write a plan on paper and put it in your supply kit, make a list of emergency contacts, find locations to go inside and outside of your home, make transportation arrangements if needed, and decide how to handle situations when accommodations are not available.

 Step 3 Be Informed: understand what might happen and know what types of emergencies are likely to affect your region.

For more information about the 3 steps you can visit Ready website at www.ready.gov.  It’s time to be prepared!

Who really enjoys change?  Maybe you enjoy a change of scenery or you enjoy the change of seasons?  These are nice changes because you know they aren’t permanent and they are planned.

Unplanned changes usually aren’t enjoyable and are usually permanent (at least until the next change).  But change always happens!  There is nothing we can do to stop change but there are things we can do so change can be more enjoyable.

Once a change is made around you or you know you must make a change the best thing you can do is get ready for it and adapt to it as fast as possible.  This seems so hard at first, but really it will help you in the end be able to enjoy the new.

We have choices in everything that we do.  The same goes with change.  We can choose to react negatively towards change.  We can choose to ignore change.  We can choose to embrace change.

If you have ever went through a change at work you may know that ignoring the change will actually result in you changing employment!  Reacting negatively to change could also cause hardship in the workplace.

If you have noticed a change in your vision and you choose to ignore it, it could become worse.  If you react quickly to the change and visit your eye doctor it is possible that the change could be treated.

Sometimes a change may take a grieving period.  We have things and people in our lives that we enjoy (if we didn’t enjoy them, we’d make a change so they weren’t there).  So, when a change causes a person or thing to leave our life it can be hard and cause us to grieve.  That’s understandable and okay.  But the sooner you let go of the past the sooner you can enjoy the future.

The best thing to do when dealing with a difficult change, is talk to someone who has went through the change their self.  This could include a co-worker, support group or peer.  And think of the 10-10-10 rule… Will this change be hard in 10 days?  Will this change be hard in 10 months?  Will this change be hard in 10 years?  Focus on your future and the change will become the past.

Senate negotiators (Carolyn McGinn, John Vratil & Laura Kelly) have held firm on two items that are crucial to the disability community. Please take a moment and email them our thanks and encouragement for their continued support.

The 2 issues at stake currently are:

1. Add $1.2M (All Funds) to the Home and Community Based Services/Physically Disabled waiver to fund an additional 60 individuals to meet maintenance of effort requirements for the Affordable Care Act.
2. Add $350,000 (State General Funds) for grant funding of Centers for Independent Living

House negotiators (Marc Rhoades, Kasha Kelley, & Bill Feuerborn) do not appear willing to fund either of these items. Please take a moment and email each of these folks. You can use the KACIL Legislative Handout for talking points.

We need to make sure they understand:

• The importance of HCBS in maintaining dignity and independence, as well as it being a fiscally sound service delivery method.
• The vital role that Centers for Independent Living serve in the Kansas disability community.
• The toll that budget cuts have taken already on CILs and HCBS. (For example, downsizing staff and programs, waiting lists)

March is Brain Injury Awareness Month. You have probably been hearing more lately about brain injury, as soldiers return from Iraq and Afghanistan, as professional and school sports are looking more at preventing brain injuries, and with the recent high profile brain injury of Rep. Gabrielle Giffords. Here are some stats that you may not know.

• 1.7 million people in the US sustain a brain injury each year – 475,000 of those are children.
• 3.1 million individuals in the US live with a life-long disability as a result of brain injury.
• Each year in the US, 52,000 people will die, 275,000 will be hospitalized, and 1.365 will be treated an released from ERs.
• TBI is a contributing factor to 1/3 of all injury related deaths in the US each year.
• Among children 0-14 years old, brain injury resulted in 2,685 deaths, 37,000 hospitalizations, and 475,000 ER visits.

Were you surprised by these statistics? Many people do not realize the extent that Brain Injury impacts us in our communities and across the nation.

 
Brain injury can happen to anyone at anytime. The leading causes of brain injury are:

• Falls – 35.2%
• Motor Vehicle crashes/accidents – 17.3%
• Struck by/against events – 16.5%
• Assaults – 10%

The symptoms of brain injury can be overlooked if the person has other physical or mental issues presenting. Brain Injury Awareness advocates are working hard to make sure that places like ERs, Doctor’s offices, Law Enforcement facilities, social services agencies, and others are aware of the symptoms of brain injury and know how to refer someone to get the needed assessments. The Mayo Clinic has a great list of symptoms association with brain injuries from Mild to Severe.

While a lot is unknown about our brains and no two brain injuries are ever the same either in causation or symptomology, the experts agree that recovery is most effective when rehabilitation starts as soon as possible. Most people who sustain brain injuries will recover in a short period of time; however, sometimes even a “mild” brain injury can have lasting impact.

For more information about Brain Injury please visit the Brain Injury Association of Kansas and Greater Kansas City If you, or someone you love has a brain injury and are in need of in-home rehabilitation services through Medicaid, please contact us at 1-800-580-7245.

I’m sure many of you are familiar with dog guides, but did you know that people/families raise dog guides from puppies to about a year old? Dog guide facilities such as The Seeing Eye, KSDS Inc., Leader Dogs for the Blind and many more send puppies home with people so they can train the dogs just like others. This includes potty training and to be obedient. After the dogs are trained and out of their “puppy” stage the family brings the dog back to the facility where it is then trained to be a guide.

The dogs must pass their training and not have any health issues in order to be a dog guide. If they are unable to perform guide dues or suffer an illness or health issue the person/family who trained it has an option to have the dog. If the person/family does not want the dog, it will then be put up for adoption. The same goes for dog guides who are elderly or are not able to perform their guide duties anymore.

I want to thank the people who train dog guides! How wonderful it must feel to be able to say that you helped train a dog that helps a person live a full and independent life! I want to know how they do it? How hard it must be to have a dog in your life for a year then have to give it up! I do think it’s great that most trainers are able to meet the person who gets the dog at the dog’s graduation. Again, thank you to the people who have such big hearts to help train these dogs to help people with disabilities!

I don’t use a wheelchair, I don’t have crutches, no cane, and no tell tale sign that says I have a disability. As a young child I had severe medical problems that gave way to Reflex Sympathetic Dystrophy and damage to the Ulnar nerve in my right arm. I also happen to be right arm dominant.

I struggled for much of my life to maintain “normal” activities with my right arms movement and use being somewhat limited. As I got older the limitations increased and the pain became a daily companion. At the age of 24 I finally gave up and applied for SSDI. I was approved in April of 2008.

Difficulties mounted

This was a minor victory because I quickly came to a place where I realized that I was entering a very dark phase of my life. December 2009 I moved back to Kansas after spending three years in Maine. I settled on Ottawa, Kansas and purposed in my heart that I would make this work.

January of 2010 I moved into my apartment with my roommate. By March I began to realize that I was in trouble. My roommate worked more than ever before and that meant that I spent more time alone. My depression and anxiety became so severe that I stopped going out in public. The fear and anxiety related to the social stigmas surrounding disabilities weighed heavy on my heart.

I saw 2 to 4 doctors a week and took 23 medications a day. I honestly spent my days sleeping and mindlessly passing the hours. Life continued on his murky path for months. I realized that I had more trouble doing the basic things around my home that “normal” people just do. I was struggling to function.

Finally I heard about a company in town that had some services for people with disabilities. I called this company and spoke to the receptionist. I scheduled an in-home appointment and within two weeks cancelled it.

I was embarrassed and ashamed. Here I sat at the age of 26 unable to carry out the most basic human tasks. I was struggling with just brushing my hair and would just throw it up into pony tails to hide the tangles.

Taking the First Steps

Two months later I gave in, swallowed what tiny bit of pride that I had left, and called that company back. I expected them to just hang up on me. I mean who would blame them? I wasted their time and cancelled last time.

Instead of being faced with indifference or rudeness I was treated with respect and more kindness than was even deserved. I set the appointment and hung up feeling, if even only slightly, hopeful!

A week later the gentleman from that company came to my house. As we went through the appointment I felt so ashamed and embarrassed that tears came. I found myself having to tell this kind stranger things about my body and my health that I had never told anyone.

After the assessment he told me about the steps involved and the waiting list. I was disheartened. I had opened up about all of this and told all my secrets. I told him all of it and it was for nothing because I would not see services for years.

Finding Hope in Working Healthy

Then he told me that there was the working healthy program. He explained the basics and also told me that he may be able to get me a job where he works. I was delighted. Could this really happen?

After our appointment was completed I called Working Healthy. I was accepted into the program within two weeks. I interviewed at the gentleman’s company and got the job in September 2010. I was just amazed. I kept thinking was there really a CHOICE for me? Could I really get out of this dark place and modulate towards a better future?

I look back at the way my life was and compare it to my life now. I went from being so depressed that I would not go out in public and dealing with so much chronic pain that I could not function to who I am now. I am so proud to say that I am now in a much better place.

One year to the day after being hired I was promoted. I help people with disabilities every day. I help them learn to help themselves and I understand their struggles. I help with wheelchair ramps, mountains of paperwork, assistive technology, medical equipment, finding funding sources, youth advocacy, and I help people learn Independent Living Skills.

Thankful

All I can honestly say is thank you! Thank you to the wonderful people that I am now lucky enough to call my co-workers who took a chance on me. Thank you to Jonathan Sproule for coming that day to assess me and telling me that I could get up and telling me that I could live and not just survive.

Thank you to my mother Rita Marriott who is also my PCA, helps me be the best me that I can be, comes to work every day to help me, and never stops believing in me. Thank you to the Resource Center for Independent Living! RCIL has helped me find my voice, has helped me find my independence, and has helped me realize that I too can fan the flame of acceptance!

Without RCIL and centers just like it all over Kansas I know that I would NOT be where I am today.

This is a guest post written and submitted by Jennifer S. Thank you, Jennifer for sharing your story! ]]> http://rcilinc.org/independent-living/how-i-found-my-independence/feed 0 http://rcilinc.org/rcil-updates/a-day-in-the-life-of-rcil-payroll http://rcilinc.org/rcil-updates/a-day-in-the-life-of-rcil-payroll#comments Mon, 12 Mar 2012 12:07:57 +0000 Summer Ludwig http://rcilinc.org/?p=1752