Are you on the Physical Disability wait list?  Have you been dropped from it?  You need to read this article from the Kansas Health Institute and contact the Kansas Department for Aging and Disability Services (KDADS)!

http://www.khi.org/news/article/state-seeks-kansans-with-physical-disabilities-dropped-from-wait-list-for-m

Contact information for KDADS

Email  KDADS.HCBS-KS@ks.gov

New England Building 503 S. Kansas Ave. Topeka, KS 66603-3404
Main: 785-296-4986
Toll Free: 800-432-3535 (in Kansas only)
TTY Number: 785-291-3167
Fax: 785-296-0256
Business Hours:  Monday through Friday – 8 am to 5 pm

 

 

 

Just like any other twenty-seven year old American woman I just want to live a happy, successful, and meaningful life. From the outside I look like a “normal” woman. When you look at my brown hair, brown eyes, and average height you will see a woman who looks pretty “normal”. What you won’t see is my disability.

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!

Waiting for Help

Categorized: Independent Living

Today we share the story of Rebecca T. She has been on the Waiting List for Home and Community Based Services for almost 3 years. The following words are hers. Notice that Rebecca would need a minimal amount of supports to assist her in the activities that she is physically unable to do on her own.

I am 55 years old. I personally have been on the waiting list since May, 2009. I have problems breathing and I swell horribly. I am in continuous pain and have arthritis really bad in my knee and ankles. If I rinse my dishes to put them in the dishwasher, I am having trouble breathing and my lower back hurts very badly by the time I can get done. I have trouble taking care of my feet and toenails so I just do not. If I cook anything I have to start a little at a time, can not do anything on my feet for very long. Grocery shopping is a very painful experience for me even with the motorized carts, most things are out of reach and then I still have to get them in my home and put up.

I have multiple sleeping disorders, restless leg syndrome, severe obstructive sleep apnea (I am fortunate I have a c pap machine, as MEDICAID will not pay for them, I am supposed to get a new mask every 6 months and have had mine for over 1 year now) and I have severe insomnia. I wake up multiple times through the night even though I take Lunestra. Without Lunestra I barely sleep at all. I have other personal problems due to my disabilities that I will not say publically as it is way too embarrassing. I do work part time and try to stay active as I am able to be. Just getting my mail at the Post Office is a chore for me.

Please join in the advocacy action to contact the Legislators on the Senate Ways and Means Committee and the House Appropriations Committee and let them know that the Waiting List must be funded! There are over 3,400 stories like Rebecca’s, and that number is growing.

From now through Thursday February 16th, we need the disability community to contact each member of the House Social Services Budget Committee. A complete list of names and contact information is available here.

As they are working on budget issues we need to make sure they know the importance of funding the Home and Community Based services Physically Disabled waiting list and to restore the Financial Management Services(FMS) rate back to $140.

For a great write up on these issues please check out KHI’s story about the hardships facing Centers for Independent Living and the disability community in Kansas.

Shannon Jones assembled the following handouts to use in making your contacts with the Legislators.

Some of the talking points for funding the waiting list are:

  • As of February 1, 2012 there are 3,433 persons waiting for HCBS/PD services.
  • 30 persons died while waiting during the month of Jan. 2012
  • 10 persons entered a nursing facility during the month of Jan. 2012.
  • The last person offered PD Services had been waiting for 3 years!
  • Since 2010, 1,200 persons have come off of the PD Waiver, yet no one is coming off the waiting list.
  • Approximately $33 million (State funds) would fund HCBS waiver services for those waiting.

Some of the talking points for increasing the FMS rate are:

  • Last fall, Providers were notified of the $115 reduced rate with no justification and no opportunity for discussion.
  • Providers are asking for a fair rate for services delivered.
  • CILs anticipate additional layoffs associated with the FMS, which will amount to roughly a 25% reduction in agency staffing, the majority of which are people with disabilities.

Once you have made contact with each Legislator on the House Social Services Budget Committee, please email me any responses that you receive so we can track and amend our message as needed.