I want to stay living in my home
My name is Herb, and I am a 70 year-old man who was born with a severe case of Cerebral Palsy. Since I couldn't use my hands, my mom fed and took care of all my needs until she died 5 years ago. Since I wanted to live independently and not waste away in a nursing home, I continued to live in my house.
The state pays part of the cost of my caregivers, However, they don't pay for all the hours I need to take care of my needs. Here is a list of my yearly out-of-pocket expenses that the state doesn't cover.
Caregivers $ 33,000
Medical $ 10,000
With cutbacks to the Illinois budget, the small pension I get isn't enough to pay the Personal Assistants I require to help me eat, drink, bath, use the restroom, and all of my basic human needs, my rent, and the vehicle I require to go to my doctor appointments and church. As it stands now, I can only afford to pay my P.A.'s to be with me 18 hours a day, and I still have a $1,500 per month deficit in my living expenses. Despite my condition, I am healthy and hope to live many more years. However I know that many people who are placed in nursing homes die within 6 months just from the loneliness and neglect. I do not want to be one of these people. Please watch my video to learn more about my life, and if you can, make a donation towards my $18,000 goal. This will afford one more year of living independently, and not dying alone and forgotten like my friend Bruce.
ABOUT MY LIFE
I have spent my life confined to my wheelchair, unable to use my hands or to walk. However I did learn to control my wheelchair with a joystick, write, type, and eventually use a computer mouse using only my left foot. I attended college and worked for the National Weather Service for 34 years. I lived with my mother until she died, and with her help, and state paid personal assistants as my care takers, I have lived a dignified and productive life. Though I do not have the freedom that comes with a healthy body, I am free in the next best way possible, I have my independence and am not left to whither in an institution. (Please read the story in Update #3 section about my friend Bruce, as it was he who inspired me to start an organization to assist the disabled so that others wouldn't have to suffer as he did). The links to the 2 organization that I co founded are ;
I wrote several stories about people with disabilities, my advocacy work and I am writing an autobiography about my life. You can order select stories by reading option 3 or by clicking on this link
I hope the video and my stories will inspire others. Please donate and share.
THANK YOU AND GOD BLESS,
I met Bruce at a social for people with disabilities that my church has every month. This was the first time that I saw him there. His mother was holding a towel by his mouth to catch the drops of pop dripping while he was trying to drink trough a straw. He had a hard time talking because of his breathing, but I was able to learn that he was leaving in the nursing home 4 blocks from my house. While my mother and his mother were talking, I was planning a visit with Bruce before the next month's social. As mom pushing down the ramp, I watched Bruce's nephew and his mom load him into his van.
Since I was on the Illinois Developmental Distribution Advocacy Authority (IDDAA) I made a commitment to help him. I got one of our advocates to help him get out of the nursing home. During the year that I had the honor of knowing him, I learned that Bruce developed MS at the age of 30. He got married at the age of 20.He always wanted kids and after seeing birth control pills fall from her bag, his fear that his wife was thinking about leaving him grew.
Did Bruce's leave him? What caused him to become disabled? Find out what happened.
If you donate $10.00, or more, I'll email you this story, plus provide you with a link to my other stories. Stories like "Tire Tracks" is popular. After you donate at
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a “disabled man”. Therefore, she left him, never to return.
His mother and father tried to take care of him at home, but they did not like having his Personal
Care Assistant around the house. They wanted to travel in their golden years, and were mad
that they had to take care of their son.
Upon hearing their cries, Bruce took many pills to end his life. Bruce was taken to a hospital
where his life was saved. Bruce didn't want his parents to give-up their life plans just to take
care of him.
Bruce signed himself in a nursing home close to where his parents lived, and gave all his money
to them. Bruce wasted away for 10 years in this nursing home to the point of not being able to
move his body or cry for help.
On a cold Sunday I went to visit Bruce. With a tube
coming from his mouth, Bruce was throwing-up all over himself and could not call for help. I looked all over the building for a nurse (Bruce’s room was 10 feet from the nurses'
station). Bruce was taken to the hospital for 2 weeks until his medicare was used up.
Bruce’s mother wanted him back in a nursing home, and told me to “Stay out of her business”. Bruce died 2 weeks later in the same nursing home. Bruce died alone. His life ended without dignity because his family didn't want to take their time to love and be with him.
True love comes from God and can't be bought, sold, or traded. But we are the ones who must give that love to one another during our time on earth.
Herb, you and I are same age and I founded 4 organizations of which 2 are under the umbrella of BNICEH: IMPRUVE and Rider-Driver Alliance and others are related to the green disability movement: NPPMA and Green Think Tank for the Disability Community. I faced similar circumstances due to low retirement income, but besides desire to return to meaningful paid work, I am trusting God and working metaphysically. Meanwhile, I am caring for my health, praying for better personal assistants who stay long enough to make a difference and learn the job, raising money for IMPRUVE and doing art shows and jewelry shows. I need to return to life as a trainer-mentor after I have had a much needed long vacation and enough services at Karyn's, KingSpa or holistic spiritual retreat. I pray that you reach your goal. Much success. Love and Peace, Maat